Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Meta-Analysis
. 2014 Jun 18;2014(6):CD003148.
doi: 10.1002/14651858.CD003148.pub3.

Psychological interventions for individuals with cystic fibrosis and their families

Lutz Goldbeck  1 , Astrid Fidika, Marion Herle, Alexandra L Quittner
Affiliations
Meta-Analysis

Psychological interventions for individuals with cystic fibrosis and their families

Lutz Goldbeck et al. Cochrane Database Syst Rev. .

Abstract

Background: With increasing survival estimates for individuals with cystic fibrosis, long-term management has become an important focus. Psychological interventions are largely concerned with adherence to treatment, emotional and social adaptation and health-related quality of life. We are unaware of any relevant systematic reviews.

Objectives: To determine whether psychological interventions for people with cystic fibrosis provide significant psychosocial and physical benefits in addition to standard medical care.

Search methods: Studies were identified from two Cochrane trials registers (Cystic Fibrosis and Genetic Disorders Group; Depression, Anxiety and Neurosis Group), Ovid MEDLINE and PsychINFO; unpublished trials were located through professional networks and Listserves. Most recent search of the Cystic Fibrosis and Genetic Disorders Group's register: 19 December 2013.Most recent search of the Depression, Anxiety and Neurosis Group's register: 12 November 2013.

Selection criteria: Randomised controlled studies of a broad range of psychological interventions evaluating subjective and objective health outcomes, such as quality of life or pulmonary function, in individuals of all ages with cystic fibrosis and their immediate family. We were interested in psychological interventions, including psychological methods within the scope of psychotherapeutic or psychosomatic mechanism of action (e.g. cognitive behavioural, cognitive, family systems or systemic, psycho-dynamic, or other, e.g. supportive, relaxation, or biofeedback), which were aimed at improving psychological and psychosocial outcomes (e.g. quality of life, levels of stress or distress, psychopathology, etc.), adaptation to disease management and physiological outcomes.

Data collection and analysis: Three authors were involved in selecting the eligible studies and two of these authors assessed their risk of bias.

Main results: The review includes 16 studies (eight new studies included in this update) representing data from 556 participants. Studies are diverse in their design and their methods. They cover interventions with generic approaches, as well as interventions developed specifically to target disease-specific symptoms and problems in people with cystic fibrosis. These include cognitive behavioural interventions to improve adherence to nutrition or psychosocial adjustment, cognitive interventions to improve adherence or those associated with decision making in lung transplantation, a community-based support intervention and other interventions, such as self-hypnosis, respiratory muscle biofeedback, music therapy, dance and movement therapy, and a tele-medicine intervention to support patients awaiting transplantation.A substantial proportion of outcomes relate to adherence, changes in physical status or other specific treatment concerns during the chronic phase of the disease.There is some evidence that behavioural interventions targeting nutrition and growth in children (4 to 12 years) with cystic fibrosis are effective in the short term. Evidence was found that providing a structured decision-making tool for patients considering lung transplantation improves patients' knowledge of and expectations about the transplant, and reduces decisional conflict in the short term. One study about training in biofeedback-assisted breathing demonstrated some evidence that it improved some lung function measurements. Currently there is insufficient evidence for interventions aimed at other aspects of the disease process.

Authors' conclusions: Currently, insufficient evidence exists on psychological interventions or approaches to support people with cystic fibrosis and their caregivers, although some of the studies were promising. Due to the heterogeneity between studies, more of each type of intervention are needed to support preliminary evidence. Multicentre studies, with consequent funding implications, are needed to increase the sample size of these studies and enhance the statistical power and precision to detect important findings. In addition, multicentre studies could improve the generalisation of results by minimizing centre or therapist effects. Psychological interventions should be targeted to illness-specific symptoms or behaviours to demonstrate efficacy.

PubMed Disclaimer

Conflict of interest statement

None known.

Figures

1
1
Number of reports yielded by the new search for the current update (2014)
2
2
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
1.1
1.1. Analysis
Comparison 1: Behavioural group treatment versus wait list control, Outcome 1: Pulmonary function
1.2
1.2. Analysis
Comparison 1: Behavioural group treatment versus wait list control, Outcome 2: Anthropometric measures
1.3
1.3. Analysis
Comparison 1: Behavioural group treatment versus wait list control, Outcome 3: Adherence
1.4
1.4. Analysis
Comparison 1: Behavioural group treatment versus wait list control, Outcome 4: Nutrition status
2.1
2.1. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 1: Anthropometric change scores
2.2
2.2. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 2: % Anthropometric
2.3
2.3. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 3: Antropometric
2.4
2.4. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 4: Pulmonary function
2.5
2.5. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 5: Adherence (nutrition)
2.6
2.6. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 6: Relational
2.7
2.7. Analysis
Comparison 2: Nutrional intervention plus behavioural management training (BEH) versus nutritional intervention alone (NUT), Outcome 7: Nutritional status
3.1
3.1. Analysis
Comparison 3: Behavioral and nutritional intervention (BEH) versus standard care control (CTL), Outcome 1: total energy intake per day (kcal)
3.2
3.2. Analysis
Comparison 3: Behavioral and nutritional intervention (BEH) versus standard care control (CTL), Outcome 2: % fat intake
4.1
4.1. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 1: Pulmonary function (FEV1)
4.2
4.2. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 2: Height (cm)
4.3
4.3. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 3: Weight in (kg)
4.4
4.4. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 4: Perceived illness experience
4.5
4.5. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 5: Children's loneliness
4.6
4.6. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 6: Social support ‐ peers
4.7
4.7. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 7: Social support ‐ classmates
4.8
4.8. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 8: Self competence ‐ subscale 'global self‐worth'
4.9
4.9. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 9: Self‐competence ‐ subscale 'scholastic competence'
4.10
4.10. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 10: Self‐competence ‐ subscale 'social acceptance'
4.11
4.11. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 11: Self‐competence ‐ subscale 'athletic competence'
4.12
4.12. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 12: Self‐competence ‐ subscale 'physical appearance'
4.13
4.13. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 13: Self‐competence ‐ subscale 'behavioral conduct'
4.14
4.14. Analysis
Comparison 4: Educational problem‐solving and social skills intervention versus usual care, Outcome 14: Functional health status
5.1
5.1. Analysis
Comparison 5: Written self‐disclosure intervention versus standard care, Outcome 1: Subjective health status ‐ PHQ
5.2
5.2. Analysis
Comparison 5: Written self‐disclosure intervention versus standard care, Outcome 2: Subjective health status ‐ SF‐12
5.3
5.3. Analysis
Comparison 5: Written self‐disclosure intervention versus standard care, Outcome 3: FEV1 3‐month follow up
5.4
5.4. Analysis
Comparison 5: Written self‐disclosure intervention versus standard care, Outcome 4: BMI 3‐month follow up
5.5
5.5. Analysis
Comparison 5: Written self‐disclosure intervention versus standard care, Outcome 5: Health care utilization
6.1
6.1. Analysis
Comparison 6: Motivational Interviewing via telephone (3‐month period) versus treatment as usual, Outcome 1: Quality of life
6.2
6.2. Analysis
Comparison 6: Motivational Interviewing via telephone (3‐month period) versus treatment as usual, Outcome 2: Psychological distress
6.3
6.3. Analysis
Comparison 6: Motivational Interviewing via telephone (3‐month period) versus treatment as usual, Outcome 3: Lung function
6.4
6.4. Analysis
Comparison 6: Motivational Interviewing via telephone (3‐month period) versus treatment as usual, Outcome 4: % adherence behavior post intervention
7.1
7.1. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 1: Participants' knowledge
7.2
7.2. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 2: Patient expectations
7.3
7.3. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 3: Decisional conflict
7.4
7.4. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 4: Patient's stated choice at 3‐week follow‐up
7.5
7.5. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 5: Durability of patient decisions (12‐month follow up)
7.6
7.6. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 6: Preparation for decision‐making (3‐week follow up)
7.7
7.7. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 7: Values congruence
7.8
7.8. Analysis
Comparison 7: Decision aid for patients considering lung transplantation versus usual care, Outcome 8: Acceptability
8.1
8.1. Analysis
Comparison 8: Community‐based support program versus contact telephone number, Outcome 1: Psychiatric Symptom Index ‐ Anxiety subscale ‐ mothers
9.1
9.1. Analysis
Comparison 9: Biofeedback assisted breathing re‐training (BRT) versus biofeedback assisted relaxation training (RLXT), Outcome 1: Pulmonary function
10.1
10.1. Analysis
Comparison 10: Massage therapy versus bedtime reading control, Outcome 1: Well‐being
10.2
10.2. Analysis
Comparison 10: Massage therapy versus bedtime reading control, Outcome 2: Pulmonary function
11.1
11.1. Analysis
Comparison 11: Music therapy versus familiar music and no audiotape control, Outcome 1: Enjoyment
11.2
11.2. Analysis
Comparison 11: Music therapy versus familiar music and no audiotape control, Outcome 2: Cognitive
See this image and copyright information in PMC

Update of

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

References to studies included in this review

Belsky 1994 {published data only}
    1. Belsky J, Khanna P. The effects of self-hypnosis for children with cystic fibrosis: a pilot study. American Journal of Clinical Hypnosis 1994;36(4):282-92. - PubMed
Chernoff 2002 {published data only}
    1. Chernoff RG, Ireys HT, DeVet KA, Kim Y. A randomized, controlled trial of a community-based support program for families of children with chronic illness: Pediatric outcomes. Archives of Pediatrics & Adolescent Medicine 2002;156(6):533-539. [MEDLINE: ] - PubMed
    1. Ireys HT, Chernoff R, DeVet KA, Kim Y. Maternal outcomes of a randomized controlled trial of a community-based support program for families of children with chronic illnesses. Archives of Pediatrics & Adolescent Medicine 2001;155(7):771-777. [MEDLINE: ] - PubMed
Christian 2006 {published data only}
    1. Christian B, D'Auria J, Belyea M. Loneliness in school age children with cystic fibrosis [abstract]. Pediatric Pulmonology 2003;Suppl 25:366. 5500100000002391
    1. Christian B. Functional disability and quality of life of school-age children with cystic fibrosis [abstract]. Pediatric Pulmonology 2004;38 Suppl 27:356. 5500100000002744
    1. Christian B. The impact of chronic illness on quality of life in children with cystic fibrosis [abstract]. Pediatric Pulmonology 2006;41 Suppl 29:398. 5500100000003069
    1. Christian B. The interface between physical activity, growth, and pulmonary function with the psychosocial impact of cystic fibrosis in children [abstract]. Pediatric Pulmonology 2005;40 Suppl 28:370. 5500100000002985
    1. Christian BJ & D'Auria JP. Building life skills for children with cystic fibrosis: Effectiveness of an intervention. Nursing Research 2006;55(5):300-7. - PubMed
Delk 1994 {published data only}
    1. Delk KK, Gevirtz R, Hicks DA, Carden F, Rucker R. The effects of biofeedback assisted breathing retraining on lung functions in patients with cystic fibrosis. Chest 1994;105(1):23-8. - PubMed
Goodill 2005 {published data only}
    1. Goodill SW. Dance/movement therapy for adults with cystic fibrosis: pilot data on mood and adherence. Alternative Therapies in Health & Medicine 2005;11(1):76-7. - PubMed
Grasso 2000 {published data only}
    1. Grasso MC, Button BM, Allison DJ, Sawyer SM. Benefits of music therapy as an adjunct to chest physiotherapy in infants and toddles with cystic fibrosis. Pediatric Pulmonology 2000;29(5):371-81. - PubMed
    1. Grasso MC, Button BM, Sawyer SM, Allison DJ. Music: Meeting the challenge of adherence to chest physiotherapy for infants and toddlers with cystic fibrosis [abstract]. Pediatric Pulmonology 1998;Suppl 17:397. - PubMed
Hernandez‐Reif 1999 {published data only}
    1. Hernandez-Reif M, Field T, Krasnegor J, Martinez E, Schwartzman M, Mavunda K. Children with cystic fibrosis benefit from massage therapy. Journal of Pediatric Psychology 1999;24(2):175-81. - PubMed
Powers 2003 {published and unpublished data}
    1. Powers SW, Byars KC, Mitchell MJ, Schindler T, Patton SR, Zeller MH. A randomized pilot study of behavioral treatment to increase calorie intake in toddlers with cystic fibrosis. Child Health Care 2003;32:297-311.
    1. Powers SW, Byars KC, Mitchell MJ, Schindler T, Patton SR, Zeller MH. Nutritional benefits of two early intervention programs for toddlers with cystic fibrosis: A randomized pilot study. personal communication 2001.
    1. Powers SW, Schindler T, Schwarber L, Deeks CM, Byars KC, Arthur S, et al. Behavioral treatment to improve nutrition in toddlers with cystic fibrosis [abstract]. Pediatric Pulmonology 1999;Suppl 19:329.
Powers 2005 {published data only}
    1. Powers SW, Jones JS, Ferguson KS, Heidemann M, Henry R, Piazza-Waggoner C, et al. Behavioural treatment for toddlers and pre-schoolers with cystic fibrosis produces recommended energy intake and normal rates of growth [abstract]. Pediatric Pulmonology 2004;38(27):361.
    1. Powers SW, Jones JS, Ferguson KS, Henry R, Heidemann M, Patton SR, et al. Overcoming barriers to evidence-based nutrition treatment for preschoolers such as distance from cystic fibrosis center and multiple food allergies [abstract]. Pediatric Pulmonology 2004;38(27):341.
    1. Powers SW, Jones JS, Ferguson KS, Piazza-Waggoner C, Daines C, Acton JD. Randomized clinical trial of behavioral and nutrition treatment to improve energy intake and growth in toddlers and preschoolers with cystic fibrosis. Pediatrics 2005;116(6):1442-50. - PubMed
    1. Powers SW, Piazza-Waggoner C, Jones J, Daines C, Acton J. Impact of behavioral and nutrition treatment for toddlers and preschoolers with CF on energy intake and growth maintains for 12 and 18 months [abstract]. Pediatric Pulmonology 2005;40(Suppl 28):372.
    1. Powers SW. Nutrition in early childhood: focus on parent interaction [abstract]. Pediatric Pulmonology 2003;Suppl 25:138.
Quinn 2004 {published and unpublished data}
    1. Quinn J, Latchford G, Duff A, Conner M, Pollard K, Morrison L, Conway S, Marsden R. Measuring, predicting and improving adherence to inhalation therapy in patients with CF: Randomised controlled study of motivational interviewing [abstract]. Pediatric Pulmonology 2004;38(S27):360. [MEDLINE: ]
Stark 1996 {published data only}
    1. Stark LJ, Mulvihill MM, Powers SW, Jelalian E, Keating K, Creveling S, et al. Behavioral intervention to improve calorie intake of children with cystic fibrosis: Treatment versus wait list control. Journal of Pediatric Gastroenterology and Nutrition 1996;22(3):240-53. - PubMed
Stark 2003 {published and unpublished data}
    1. Stark LJ, Opipari LC, Spieth LE, Jelalian E, Quittner AL, Higgins L, et al. Contribution of behavior therapy to dietary treatment in cystic fibrosis: A randomized controlled study within 2-year follow-up. Behavior Therapy 2003;34(2):237-258. [MEDLINE: ]
    1. Stark LJ. Contribution of behavior therapy to nutrition adherence in cystic fibrosis: A two-year randomized controlled study. Personal communication 2001.
Stark 2009 {published data only}
    1. Janicke DM, Mitchell MJ, Quittner AL, Piazza-Waggoner C, Stark LJ. The impact of behavioral intervention on family interactions at mealtime in pediatric cystic fibrosis. Children's Health Care 2008;37(1):49-66.
    1. Stark LJ, Opipari-Arrigan L, Quittner AL, Bean J, Powers SW. The effects of an intensive behavior and nutrition intervention compared to standard of care on weight outcomes in CF. Pediatric Pulmonology 2011;46(1):31-5. - PMC - PubMed
    1. Stark LJ, Quittner AL, Powers SW, Opipari Arrigan L, Bean JA, Duggan C, et al. A randomized clinical trial of behavioral intervention and nutrition education to improve caloric intake and weight in children with cystic fibrosis. Archives of Pediatrics & Adolescent Medicine 2009;163(10):915-21. - PMC - PubMed
Taylor 2003 {published data only}
    1. Taylor LA, Wallander JL, Anderson D, Beasley P, Brown RT. Improving health care utilization, improving chronic disease utilization, health status, and adjustment in adolescents and young adults with cystic fibrosis: A preliminary report. Journal of Clinical Psychology in Medical Settings 2003;10(1):9-16.
Vandemheen 2009 {published data only}
    1. Vandemheen K, Stacey D, Hennessey R, Gooyers T, Salgado J, Freitag A, et al. Translating research into practice: implementing a decision aid for adult cystic fibrosis patients [abstract]. Pediatric Pulmonology 2011;46 (Suppl 34):427. 5500100000011188
    1. Vandemheen KL, O'Connor A, Bell SC, Freitag A, Bye P, Jeanneret A, et al. Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation. American Journal of Respiratory and Critical Care Medicine 2009;180(8):761-8. - PubMed
Wilkinson 2008 {published data only}
    1. Wilkinson OM, Duncan-Skingle F, Pryor JA, Hodson ME. A feasibility study of home telemedicine for patients with cystic fibrosis awaiting transplantation. Journal of Telemedicine and Telecare 2008;14(4):182-5. - PubMed

References to studies excluded from this review

Barbero 1996 {published data only}
    1. Barbero GJ. The science and humanity of cystic fibrosis. Current Problems in Pediatrics 1996;26(10):345-54. - PubMed
Bartholomew 1997 {published data only}
    1. Bartholomew LK, Czyzewski DI, Parcel GS, Swank PR, Sockrider MM, Mariotto MJ, et al. Self-management of cystic fibrosis: Short-term outcomes of the Cystic Fibrosis Family Education Program. Health Education and Behavior 1997;24(5):652-666. - PubMed
Bingham 2010 {published data only}
    1. Bingham PM, Bates JH, Thompson Figueroa J, Lahiri T. A breath biofeedback computer game for children with cystic fibrosis. Clinical Pediatrics 2010;49(4):337-42. - PubMed
Brady 1991 {published data only}
    1. Brady MS, Rickard K, Yu PL, Eigen H. Effectiveness and safety of small versus large doses of enteric coated pancreatic enzymes in reducing steatorrhea in children with cystic fibrosis. Pediatric Pulmonology 1991;10(2):79-85. - PubMed
Brandt 1996 {published data only}
    1. Brandt NJ, Schwartz M, Skovby F, Clausen H. A follow-up study of carriers of cystic fibrosis. Ugeskrift for laeger 1996;158(33):4623-7. - PubMed
Brown 1994 {published data only}
    1. Brown RK, Kelly FJ. Evidence of increased oxidative damage in patients with cystic fibrosis. Pediatric Research 1994;36(4):487-93. - PubMed
Castellani 2011 {published data only}
    1. Castellani C, Perobelli S, Bianchi V, Seia M, Melotti P, Zanolla L, et al. An interactive computer program can effectively educate potential users of cystic fibrosis carrier tests. American Journal of Medical Genetics. Part A 2011;155A(4):778-85. - PubMed
Cheuvront 1998 {published data only}
    1. Cheuvront B, Sorenson JR, Callanan NP, Stearns SC, DeVellis BM. Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives. American Journal of Medical Genetics 1998;75(5):461-8. - PubMed
    1. Sorenson JR, Cheuvront B, Bruning A, Talton S, DeVellis BM, Kock G, et al. Proband and parent assistance in identifying relatives for cystic fibrosis carrier testing. American Journal of Medical Genetics 1996;63(3):419-25. - PubMed
    1. Sorenson JR, Cheuvront B, DeVellis BM, Callanan N, Silverman L, Kock G, et al. Acceptance of home and clinic-based cystic fibrosis carrier education and testing by first, second, and third degree relatives of cystic fibrosis patients. American Journal of Medical Genetics 1997;70(2):121-9. - PubMed
Clayton 1995 {published data only}
    1. Clayton EW, Hannig VL, Pfotenhauer JP, Parker RA, Campbell PW, Phillips JA. Teaching about cystic fibrosis carrier screening by using written and video information. American Journal of Human Genetics 1995;57(1):171-81. - PMC - PubMed
Davis 2002 {published data only}
    1. Davis MA, Quittner AL, Stack CM, Yang MC. Controlled evaluation of the STARBRIGHT CD-ROM program for children and adolescents with Cystic Fibrosis. Journal of Pediatric Psychology 2004;29(4):259-67. 5500100000002613 - PubMed
    1. Davis MA, Quittner AL, Stack CM. Controlled evaluation of the STARBRIGHT Explorer Series CD-Rom program for children and adolescents with cystic fibrosis [abstract]. Pediatric Pulmonology 2002;Suppl 24:351. 5500100000002209 - PubMed
    1. Quittner AL, Drotar D. Controlled trial of family interventions for cystic fibrosis. NIH Research Grant, Oct 1997 to Aug 2003 1997.
    1. Wade SL. Commentary: Computer-based interventions in pediatric psychology. Journal of Pediatric Psychology 2004;29(4):269-272. [MEDLINE: ] - PubMed
Dodd 1997 {published data only}
    1. Dodd ME, Abbott J, Haworth CS, Moorcroft AJ, Webb AK. Validity of a visual numerical general quality of life scale and chest scale in adults with cystic fibrosis [abstract]. Thorax 1997;52 Suppl 6:A45.
Dodd 2001 {published data only}
    1. Dodd J, Barry S, Moran A, Gallagher C. The effect of verbal motivation on exercise performance in patients with cystic fibrosis [abstract]. American Journal of Respiratory and Critical Care Medicine 2001;163 (5 Suppl):A624.
Donaldson 1995 {published data only}
    1. Donaldson C, Shackley P, Abdalla M, Miedzybrodzka Z. Willingness to pay for antenatal carrier screening for cystic fibrosis. Health Economics 1995;4(6):439-52. - PubMed
    1. Marteau TM, Michie S, Miedzybrodzka ZH, Allanson A. Incorrect recall of residual risk three years after carrier screening for cystic fibrosis: A comparison of two-step and couple screening. American Journal of Obstetrics & Gynecology 1999;181(12):165-9. - PubMed
    1. Miedzybrodzka ZH, Haites N, Hall M, Templeton A, Marteau T, Dean J, et al. Two approaches to ante-natal carrier screening for cystic fibrosis [abstract]. In: Proceedings of the 11th International Cystic Fibrosis Congress. 1992:TP20.
    1. Miedzybrodzka ZH, Hall MH, Mollison J, Templeton A, Russell IT, Dean JC, et al. Antenatal screening for carriers of cystic fibrosis: randomised trial of stepwise versus couple screening. British Medical Journal 1995;310(6976):353-7. - PMC - PubMed
    1. Miedzybrodzka ZH, Marteau TM. Recall of residual risk three years after carrier screening for CF: a comparison of two-step and couple screening [abstract]. Journal of Medical Genetics 1999;36 Suppl 1:570. - PubMed
Downs 2006 {published data only}
    1. Downs JA, Roberts CM, Blackmore AM, Le Souëf PN, Jenkins SC. Benefits of an education programme on the self-management of aerosol and airway treatments for children with cystic fibrosis. Chronic Respiratory Disease 2006;3:19-27. - PubMed
Eng 1997 {published data only}
    1. Eng CM, Schechter C, Robinowitz J, Fulop G, Burgert T, Levy B, et al. Prenatal genetic carrier testing using triple disease screening. Journal of the American Medical Association 1997;278(15):1268-72. - PubMed
Falkman 1977 {published data only}
    1. Falkman C. Cystic fibrosis - A psychological study of 52 children and their families. Acta Paediatrica Scandinavia 1977;Suppl 269:7-93. - PubMed
Gee 2000 {published data only}
    1. Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax 2000;55(11):946-54. - PMC - PubMed
Georgiopoulos 2011 {published data only}
    1. Georgiopoulos AM, Hua LL. The diagnosis and treatment of attention deficit-hyperactivity disorder in children and adolescents with cystic fibrosis: A retrospective study. Psychosomatics: Journal of Consultation Liaison Psychiatry 2011;52(2):160-166. - PubMed
Goa 1997 {published data only}
    1. Goa KL, Lamb H. Dornase alfa. A review of pharmacoeconomic and quality-of-life aspects of its use in cystic fibrosis. Pharmacoeconomics 1997;12(3):409-22. - PubMed
Goldbeck 2001 {published data only}
    1. Goldbeck L, Babka C. Development and evaluation of a multi-family psychoeducational program for cystic fibrosis. Patient Education and Counselling 2001;44(2):187-92. - PubMed
Goldbeck 2011a {published data only}
    1. Goldbeck L, Holling I, Schlack R, West C, Besier T. The impact of an inpatient family-oriented rehabilitation program on parent-reported psychological symptoms of chronically ill children. Klinische Padiatrie 2011;223(2):79-84. - PubMed
Gonciartz 1988 {published data only}
    1. Gonciartz Z, Besser P, Lelek E, Gundermann KJ, Johannes KJ. Randomised placebo-controlled double blind trial on 'essential' phospholipids in the treatment of fatty liver associated with diabetes. Medicine & Chirurgie Digestives 1988;17:61-5.
Green 1995 {published data only}
    1. Green JM. Obstetricians' views on prenatal diagnosis and termination of pregnancy: 1980 compared with 1993. British Journal of Obstetrics and Gynaecology 1995;102(3):228-32. - PubMed
Gremse 1998 {published data only}
    1. Gremse DA, Lytle JM, Sacks AI, Balistreri WF. Characterization of failure to imbibe in infants. Clinical Pediatrics 1998;37(5):305-9. - PubMed
Grody 1997 {published data only}
    1. Grody WW, Dunkel-Schetter C, Tatsugawa ZH, Fox MA, Fang CY, Cantor RM, et al. PCR based screening for cystic fibrosis carrier mutations in an ethnically diverse pregnant population. American Journal of Human Genetics 1997;60(4):935-47. - PMC - PubMed
Gulmans 1999 {published data only}
    1. Gulmans VA, Meer K, Brackel HJL, Faber JAJ, Berger R, Helders PJM. Outpatient Exercise training in Children with Cystic Fibrosis: Physiological Effects, Perceived Competence, and Acceptability. Pediatric Pulmonology 1999;28(1):39-46. - PubMed
Haddow 1999 {published data only}
    1. Haddow JE, Bradley LA, Palomaki GE, Doherty RA. Issues for implementing prenatal screening for cystic fibrosis: results of a working conference. Journal of Medical Screening 1999;6(2):60-6. - PubMed
Hains 1997 {published data only}
    1. Hains AA, Davies WH, Behrens D, Biller JA. Cognitive behavioral interventions for adolescents with cystic fibrosis. Journal of Pediatric Psychology 1997;22(5):669-87. - PubMed
Hains 2001 {published data only}
    1. Hains AA, Davies WH, Behrens D, Freeman ME, Biller JA. Effectiveness of a cognitive behavioral intervention for adults with cystic fibrosis. Journal of Clinical Psychology in Medical Settings 2001.
Hodson 1997 {published data only}
    1. Hodson ME. Psychosocial aspects for the management of adults with cystic fibrosis. Pediatric Pulmonology 1997;Suppl 16:113-4. - PubMed
Jelalian 1998 {published data only}
    1. Jelalian E, Stark LJ, Reynolds L, Seifer R. Nutrition intervention for weight gain in cystic fibrosis: A meta-analysis. Journal of Pediatrics 1998;132(3 Pt 1):486-92. - PubMed
Johnson 2001 {published data only}
    1. Johnson KB, Ravert RD, Everton A. Hopkins Teen Central: Assessment of an internet-based support system for children with cystic fibrosis. Pediatrics 2001;107(2):E24. - PubMed
Kollberg 1982 {published data only}
    1. Kollberg H. Sociomedical conditions for Swedish patients with cystic fibrosis. A review of the past twelve years. International Journal of Rehabilitation Research 1982;5(3):345-61. - PubMed
Krauth 1999 {published data only}
    1. Krauth C, Busse R, Smaczny C, Ullrich G, Wagner TO, Weber J, et al. Cost comparison of hospital and ambulatory I.V. therapy in adult cystic fibrosis patients: Results of a controlled prospective study. Medizinische Klinik 1999;94(10):541-8. - PubMed
Le Heuzey 1997 {published data only}
    1. Le Heuzey MF, Mouren-Simeoni MC, Navarro J. Psychological adjustment of children and adolescents with cystic fibrosis [abstract]. Pediatric Pulmonology 1997;Suppl 16:259. - PubMed
Leonard 1995 {published data only}
    1. Leonard KP, Bartholomew LK, Swank PR, Parcel GS. A comparison of two approaches to education about carrier testing for cystic fibrosis. Journal of Genetic Counselling 1995;4(2):97-113. - PubMed
Lindström 1994 {published data only}
    1. Lindström B. The essence of existence. On the quality of life of children in the Nordic countries. Thesis - NHV - Report, The Nordic School of Public Health, Göteborg, Sweden 1994.
Loader 1996 {published data only}
    1. Loader S, Caldwell P, Kozyra A, Levenkron JC, Boehm CD, Kazazian HH, et al. Cystic fibrosis carrier population screening in the primary care setting. American Journal of Human Genetics 1996;59(1):234-47. - PMC - PubMed
Magnussen 1992 {published data only}
    1. Magnussen H, Scheidt Mackes M. The effect of flupertine on respiratory drive in healthy probands and patients with various lung diseases. Pneumologie 1992;46:580-6. - PubMed
Phillipson 2000 {published data only}
    1. Phillipson GT, Petrucco OM, Matthews CD. Congenital bilateral absence of the vas deferens, cystic fibrosis mutation analysis and intracytoplasmic sperm injection. Human Reproduction 2000;15(2):431-5. - PubMed
Pollitt 1997 {published data only}
    1. Pollitt RJ, Green A, McCabe CJ, Booth A, Cooper NJ, Leonard JV, et al. Neonatal screening for inborn errors of metabolism: cost, yield and outcome. Health Technology Assessment 1997;1(7:i-iv):1-202. - PubMed
Pop Jordanova 2010 {published data only}
    1. Pop Jordanova N, Gucev Z. Game-based peripheral biofeedback for stress assessment in children. Pediatrics International 2010;52(3):428-31. - PubMed
Ralston 2008 {published data only}
    1. Ralston S, Roohi M. A randomized, controlled trial of smoking cessation counseling provided during child hospitalization for respiratory illness. Pediatric Pulmonology 2008;43(6):561-66. - PubMed
Ramström 2000 {published data only}
    1. Ramström H, Erwander I, Mared L, Kornfält R, Seiving B. Pharmaceutical intervention in the care of cystic fibrosis patients. Journal of Clinical Pharmaceutical Therapy 2000;25(6):427-34. - PubMed
Rault 2012 {published data only}
    1. David V, Rault G, Pougheon-Bertrand D, Dorenlot E. Therapeutic patient education and quality improvement program: What synergy? Journal of Cystic Fibrosis 2013;12 (Suppl 1):S136.
    1. Rault G, Pougheon-Bertrand D, David V, Minguet G, Lombrail P. CF quality improvement program: A pilot phase to implement the us QIP approach in France [abstract]. Pediatric Pulmonology 2012;47 Suppl 35:401-2.
Rodrigue 2005 {published data only}
    1. Rodrigue JR, Baz MA, Widows MR, Ehlers SL. A randomized evaluation of quality-of-life therapy with patients awaiting lung transplantation. American Journal of Transplantation 2005;5(10):2425-32. - PubMed
Rozenfeld 2012 {published data only}
    1. Rozenfeld S, Mantin H, Mussaffi H, Taizi T, Landau E, Kadosh D, et al. Effect of Snoezlen on pain perception and anxiety in CF infants during sputum suction [abstract]. Pediatric Pulmonology 2012;47 (Suppl 35):441. 5500125000000042
Stapleton 2001 {published data only}
    1. Stapleton D, Tunnicliffe L, McGuiness D, Sheriff J, Sly P. Development of a nutrition and behaviour intervention program: Go and Grow with CF. Australian Journal of Nutrition and Diet 1998;55:130-7.
    1. Stapleton DR, Gurrin LC, Zubrick SR, Silburn SR, Sherriff JL, Sly PD. What do children with cystic fibrosis and their parents know about nutrition and pancreatic enzymes? Journal of the American Dietetic Association 2000;100(12):1494-500. - PubMed
    1. Stapleton DR, Gurrin LC, Zubrick SR, Silburn SR, Sly PD. The effect of 'Go and Grow with CF' on nutrition and pancreatic enzyme knowledge of children with cystic fibrosis. Australian Journal of Nutrition and Dietetics 2001;58(3):164-168. [MEDLINE: ]
Stark 2002 {published data only}
    1. Stark LJ, Mackner LM, Kessler JH, Opipari LiC, Quittner AL. Preliminary findings for calcium intake in children with cystic fibrosis following behavioral intervention for caloric intake. Children's Health Care 2002;31(2):107-18.
Thompson 1990 {published data only}
    1. Thompson RJ, Hodges K, Hamlett KW. A matched comparison of adjustment in children with cystic fibrosis and psychiatrically referred and nonreferred children. Journal of Pediatric Psychology 1990;15(6):745-59. - PubMed
Thornton 1995 {published data only}
    1. Thornton JG, Hewison J, Lilford RJ, Vail A. A randomised trial of three methods of giving information about prenatal testing. British Medical Journal 1995;311(7013):1127-30. - PMC - PubMed
Trapp 1998 {published and unpublished data}
    1. Trapp M, Barton S, Morgan H, Lockyer L. Self-administration of drugs for cystic fibrosis. Professional Nurse 1998;14(3):199-203. - PubMed
Tullis 1995 {published data only}
    1. Tullis DE, Guyatt GH. Quality of life in cystic fibrosis. Pharmacoeconomics 1995;8(1):23-33. - PubMed
Villari 1994 {published data only}
    1. Villari B, Hess OM, Piscione F, Vassalli G, Weber KT, Chiariello M. Heart function in chronic pressure overload caused by aortic stenosis: The role of collagen tissue. Cardiologia 1994;39(6):411-20. - PubMed
Ward 1999 {published data only}
    1. Ward SA, Tomezsko JL, Holsclaw DS, Paolone AM. Energy expenditure and substrate utilization in adults with cystic fibrosis and diabetes mellitus. American Journal of Clinical Nutrition 1999;69(5):913-9. - PubMed
Watson 2004 {published data only}
    1. Watson H, Truby H, Haworth CS, Bilton D. Pilot study to evaluate a home-based behavioural nutrition programme for adults. Journal of Cystic Fibrosis 2004;3 Suppl 1:S75. [MEDLINE: ]
Watson 2006 {published data only}
    1. Watson H, Bilton D, Truby H. A randomised controlled trial of a behavioural nutrition education programme "Eat Well with CF" for adults with CF. Journal of Cystic Fibrosis 2006;5 Suppl 1:S73. - PubMed
Welkenhuysen 1996 {published data only}
    1. Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M, Van-den-Berghe H, Bande-Knops J, Van-Gerven V. Adolescents' attitudes towards carrier testing for cystic fibrosis and its relative stability over time. European Journal of Human Genetics 1996;4(1):52-62. - PubMed
Williams 1997 {published data only}
    1. Williams PD, Hanson S, Karlin R, Liebergen A, Olson J, Barnard MU, et al. Outcomes of a nursing intervention for siblings of chronically ill children: A pilot study. Journal of Social Pediatric Nursing 1997;2(3):127-37. - PubMed
Wolter 1997 {published data only}
    1. Wolter JM, Bowler SD, McCormack JG, Nolan PJ. Home versus hospital therapy including intravenous antibiotics in cystic fibrosis [abstract]. In: Proceedings of the Annual Scientific Meeting of the 11th Thoracic Society of Australia and New Zealand (TSANZ). 1994:148.
    1. Wolter JM, Bowler SD, Nolan PJ, McCormack JG. Home intravenous therapy in cystic fibrosis: a prospective randomized trial examining clinical, quality of life and cost aspects. European Respiratory Journal 1997;10(4):896-900. - PubMed
    1. Wolter JM, Bowler SD, Nolan PJ, McCormack JG. Intravenous home therapy - a randomised trial in adult cystic fibrosis patients [abstract]. Australian and New Zealand Journal of Medicine 1995;25:567.

References to studies awaiting assessment

Bryon 2000 {published data only}
    1. Bryon M, Burton J, Tostevin M, Madge S. A home visit programme to improve health status and psychosocial functioning of families with a child with cystic fibrosis [abstract]. Pediatric Pulmonology 2000;Suppl 20:336.
Cannon 1999 {published data only}
    1. Cannon C, Benitez J, Scarbary J, Taylor K, Guill M. In-home videoconferencing for cystic fibrosis patient education [abstract]. Pediatric Pulmonology 1999;Suppl 19:333.
Cummings 2011 {published data only}
    1. Cummings E, Hauser J, Cameron-Tucker H, Fitzpatrick P, Jessup M, Walters EH, et al. Enhancing self-efficacy for self-management in people with cystic fibrosis. Studies in Health Technology and Informatics 2011;169:33-7. - PubMed
    1. Jessup MM, Hauser J, Cameron-Tucker H, Cummings E, Turner P, Blizzard L, Reid D. Facilitating self-management in adolescents and adults with cystic fibrosis: a pilot study [abstract]. Pediatric Pulmonology 2011;46 Suppl 34:405.
Davis 1990 {published data only}
    1. Davis P, Davis S, Mather F, Waring W. A randomized trial of home intravenous antibiotic therapy (HIVAT) in cystic fibrosis (CF): Short-term psychological effects [abstract]. Pediatric Pulmonology 1990;Suppl 5:281-2.
    1. Davis S, Mather F, Tankersly P, Waring W. A randomized trial of home intravenous antibiotic therapy (HIVAT) in cystic fibrosis (CF): Short-term safety and efficacy [abstract]. Pediatric Pulmonology 1990;Suppl 5:245.
Goldbeck 2013 {published data only}
    1. Goldbeck L, Hebestreit H, Junge S, Sens B, Smaczny C, Frank M, et al. Vemse-CF - A prospective controlled care-research study investigating the effects of a comprehensive psychosocial intervention [abstract]. Pediatric Pulmonology 2013;48 Suppl 36:430. 5500125000000138
Hass 2012 {published data only}
    1. NCT01729585. The effects of massage therapy on QOL in youth/young adults with cystic fibrosis. http://clinicaltrials.gov/show/NCT01729585NCT01729585 (accessed 01 Apil 2014).
Hatziagorou 2011 {published data only}
    1. Hatziagorou E, Chourdakis M, Chrisochoou E, Avramido V, Tsanakas J. Nutritional education improves energy intake and weight gain in children with cystic fibrosis [abstract]. Journal of Cystic Fibrosis 2011;10 Suppl1:S73.
Huang 2010 {published data only}
    1. NCT01253733. TAHLC - texting to promote adolescent health liaisons and chronic disease management.. http://clinicaltrials.gov/show/NCT01253733 (accessed 01 April 2014). 5500100000011528
Irons 2012 {published data only}
    1. Irons JY, Kenny DT, McElrea M, Chang AB. Singing therapy for young people with cystic fibrosis: a randomized controlled pilot study. Music and Medicine 2012;4(3):136-45. 5500100000007892
Jessup 2010 {published data only}
    1. Jessup MM, Cameron-Tucker H, Cummings E, Hauser J, Joseph L, Saddington H, et al. 'Someone to talk to': Adolescent and adult CF patients' feedback on their experience of a mentoring and IT intervention [abstract]. Journal of Cystic Fibrosis 2010;9 Suppl 1:S107.
Kalnins 1996 {published data only}
    1. Kalnins D, Durie P. Oral supplements versus normal food intake in children and adults [abstract]. Israel Journal of Medical Sciences 1996;32 Suppl:SD120-1. 5500100000001421
    1. Kalnins D, Durie PR, Corey M, Ellis L, Pencharz P, Tullis E. Are oral dietary supplements effective in the nutritional management of adolescents and adults with CF? [abstract]. Pediatric Pulmonology 1996;381(Suppl 13):314-5. 5500100000001420
Klig 1989 {published data only}
    1. Klig S, Denning C, Jacoby J, Xia F, Gaerlan P, Bisberg D, et al. Biopsychosocial examination of two methods of pulmonary therapy [abstract]. Pediatric Pulmonology 1989;Suppl 4:145.
Mischler 1998 {published data only}
    1. Farrell PM, Kosorok MR, Laxova A, Shen G, Koscik RE, Bruns WT, et al. Nutritional benefits of neonatal screening for cystic fibrosis. New England Journal of Medicine 1997;337(14):963-9. - PubMed
    1. Farrell PM, Mischler EH. Newborn screening for cystic fibrosis. Advances in Pediatrics 1992;39:36-69. - PubMed
    1. Fost N, Farrell PM. A prospective randomized trial of early diagnosis and treatment of cystic fibrosis: A unique ethical dilemma. Clinical Research 1989;37:495-500. - PubMed
    1. Mischler EH, Wilford BS, Fost N, Laxona A, Reiser C, Sauer CM, et al. Cystic fibrosis newborn screening: Impact on reproductive behavior and implications for genetic counseling. Pediatrics 1998;102(1 Pt 1):44-52. - PubMed
Patel 2010 {published data only}
    1. Patel L, Glasscoe C, Dixon C, Dyer K, Southern KW. Does administering a parent reported outcome measure during the annual review process improve the self efficacy of the carer of a child with CF? [abstract]. Pediatric Pulmonology 2010;45 Suppl 33:441.
Petzel 1991 {published data only}
    1. Petzel SV, Finkelstein J, Budd J, Ellis LBM. Adherence in cystic fibrosis [abstract]. Pediatric Pulmonology 1991;Suppl 6:308.
Powers 2003a {published data only}
    1. Powers SW. Nutrition in early childhood: Focus on parent interaction. Pediatric Pulmonology 2003;Suppl 25:138-9. [MEDLINE: ]
Powers 2013 {published data only}
    1. Chamberlin LA, Sullivan S, Stark L, Powers SW. Adjusting recruitment strategies and intervention format to meet enrollment goals in a multicenter trial of a behavioural treatment [abstract]. Pediatric Pulmonology 2013;48 Suppl 36:438. 5500125000000140
    1. Powers SW, Stark L, Chamberlin L, Sullivan S, Filigno S, Rausch J. A multi-site, randomized, controlled clinical trial of behavioral and nutrition treatment for preschoolers with cystic fibrosis [abstract]. Pediatric Pulmonology 2013;48 Suppl 36:402. 5500125000000143
Ruddy 2011 {published data only}
    1. NCT01325766. Study of yoga as a therapy for cystic fibrosis (CF) patients. http://clinicaltrials.gov/show/NCT01325766 (accessed 01 April 2014).
Stark 1998 {published data only}
    1. Stark LJ, Quittner AL, Opipari LC, Jones E, Powers SW, Higgins L, et al. The contribution of behavior therapy to enhancing adherence in school-age children with CF: The example of diet [abstract]. Pediatric Pulmonology 1998;Suppl 17:110-1.
Wainwright 2009 {published data only}
    1. Wainwright C, Saddington H, Busch J, Blizzard L, Cameron-Tucker H, Cheney J, et al. Improving self efficacy in adolescents and young adults with cystic fibrosis [abstract]. Journal of Cystic Fibrosis 2009;8 Suppl 2:S93.
Widman 2013 {published data only}
    1. NCT01957072. Pilot study of behavioural intervention for nutrition in cystic fibrosis. http://clinicaltrials.gov/show/NCT01957072 (accessed 01 April 2014).
Williams 1987 {published data only}
    1. Williams J, Handy DA, Booth IW, Weller PH. Intensive dietary counselling with adolescents with cystic fibrosis: What are the effects? [abstract]. In: Proceedings of the 10th International Cystic Fibrosis Congress; 1998 March 5-10; Sydney. 1988:165.
    1. Williams J, Handy DA, Weller PH, Booth IW. Intensive dietary counselling In adolescents with cystic fibrosis. Gut 1987;28:A1352.

References to ongoing studies

Quittner 2000 {published data only}
    1. DeLambo KE, Ievers-Landis CE, Drotar D, Quittner AL. Association of observed family relationship quality and problem-solving skills with treatment adherence in older children and adolescents with cystic fibrosis. Journal of Pediatric Psychology 2004;29(5):343-53. [MEDLINE: ] - PubMed
    1. Quittner AL, Drotar D, Ievers-Landis C, Slocum N, Seidner D, Jacobsen J. Adherence to medical treatments in adolescents with cystic fibrosis: The development and evaluation of family-based interventions. In: Drotar D, editors(s). Promoting adherence to medical treatment in childhood chronic illness: Concepts, methods, and interventions. First edition. Mahjah NJ: Lawrence Earlbaum Associates, 2000:383-407.
    1. Quittner AL, Drotar D, Ievers-Landis C. Intervention to increase adolescent adherence to treatment: preliminary comparisons of family therapy and cystic fibrosis family education [abstract]. Pediatric Pulmonology 1998;Suppl 17:113-4.
    1. Quittner AL, Drotar D, Ivers-Landis C, Slocum N, Buu A. Measuring adherence to treatment in adolescents with cystic fibrosis: Pros and cons of electronic monitoring [abstract]. In: Conference proceedings of the 8th Florida Conference on Child Health Psychology; 2001 April; Florida. 2001.
    1. Quittner AL, Johnson SB, Modi A. Controlled evaluation of a clinic-based intervention to promote adherence in children with cystic fibrosis. Personal communication 2002.
Quittner 2011 {published and unpublished data}
    1. Alpern AN, McLean KA, Marciel KK, Zhang J, Riekert KA, Quittner AL. Effects of clinical supervision on treatment fidelity in icare [abstract]. Pediatric Pulmonology 2012;47(S35):433-4.
    1. Barker D, Quittner AL, Riekert KA. Relating patterns of social support from friends and family to health-related quality of life [abstract]. Pediatric Pulmonology 2013;48 Suppl 36:433. 5500125000000139
    1. Blackwell LS, Romero SL, Marciel KK, Romero CV, Quittner AL. Pain in adolescents and young adults with CF: location, severity and predictors [abstract]. Pediatric Pulmonology 2012;47 Suppl 35:430. 5500125000000041
    1. McLean KA, Quittner AL, Alpern AN, Marciel KK, Riekert KA. Healthcare provider acceptability of problem-solving in the I change adherence and raise expectations (iCARE) study [abstract]. Pediatric Pulmonology 2013;48 Suppl 36:437. 5500125000000126
    1. Quittner A, Kimberg C, Marciel K, Zhang J, Riekert K. Randomized, Controlled trial of a behavioral adherence intervention for adolescents with cystic fibrosis: I change adherence and raise expectations (iCARE) [abstract]. Chest 2011;140(4 Suppl):908a.
Quittner 2012 {published and unpublished data}
    1. Blackwell LS, Romero SL, Romero CV, McLean KA, Dawkins K, Hoag J, et al. CFfone: a social networking site for adolescents and young adults with CF [abstract]. Pediatric Pulmonology 2012;47 Suppl 35:430. 5500100000011184
    1. Marciel KK, Saiman L, Quittell LM, Dawkins K, Quittner AL. Cell Phone Intervention to Improve Adherence: CysticFibrosis Care Team, Patient, and Parent Perspectives. Pediatric Pulmonology 2010;45(2):157-64. - PMC - PubMed
    1. Quittner AL, Romero SL, Blackwell LS, Marciel KK, Romero CV, Dawkins K, et al. Effect of CFfone on knowledge of disease management, psychological well-being, and health-related quality of life in adolescents and young adults with CF [abstract]. Journal of Cystic Fibrosis 2012;11 Suppl 1:S137.
    1. Quittner AL, Romero SL, Blackwell LS, McLean KA, Monzon AD, Dawkins K. Efficacy of an online social networking site: CFFONE results. Pediatric Pulmonology 2013;48 Suppl 36:135. 5500125000000144
    1. Quittner AL, Romero SL, Blackwell LS, Romero CV, Marciel KK, Dawkins K, et al. Preliminary results on the efficacy of an online social network for adolescents with CF: age and disease severity group comparisons [abstract]. Pediatric Pulmonology 2012;47 Suppl 35:388. 5500100000011541
Riekert 2012 {unpublished data only}
    1. Riekert KA, Borrelli B, Bilderback AV, green A, Eakin MN. Building adherence to live and navigate my CF experience: the balance study. Pediatric Pulmonology 2013;48 (Suppl 36):133. 5500125000000142

Additional references

Abbott 2009
    1. Abbott J, Havermans T, Harta A. Adherence to the medical regimen: clinical implications of new findings. Current Opinion in Pulmonary Medicine 2009;15(9):597-603. - PubMed
Asher 1984
    1. Asher SR, Hymel S, Renshaw PD. Loneliness in children. Child Development 1984;55(4):1456-46.
Bartholomew 1991
    1. Bartholomew LK, Parcel GS, Seilheimer DK, Czyzewski D, Spinelli SH, Congdon B. Development of a health education program to promote the self-management of cystic fibrosis.. Health Education Quarterly 1991;18(4):429-443. - PubMed
Beale 2006
    1. Beale IL. Scholarly literature review: Efficacy of psychological interventions for pediatric chronic illnesses. Journal of Pediatric Psychology 2006;31(5):437-451. [MEDLINE: ] - PubMed
Besier 2011a
    1. Besier T, Born A, Henrich G, Hinz A, Quittner AL, Goldbeck L, et al. Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatric Pulmonology 2011;46(7):672-86. - PubMed
Besier 2011b
    1. Besier T, Goldbeck L. Anxiety and depression in adolescents with CF and their caregivers. Journal of Cystic Fibrosis 2011;10(6):435-42. - PubMed
Bluebond‐Langner 2001
    1. Bluebond-Langner M, Lask B, Angst DB. Psychosocial Aspects of Cystic Fibrosis. London: Arnold, 2001.
Bobadilla 2002
    1. Bobadilla JL, Macek Jr M, Fine JP, Farrell PM. Cystic Fibrosis: A worldwide analysis of CFTR mutations - correlation with incidence data and application to screening. Human Mutation 2002;19:575-606. - PubMed
Boutron 2008
    1. Boutron I, Moher D, Altman DG, Schulz K, Ravaud P, the CONSORT Group. Extending the CONSORT Statement to randomized trials of nonpharmacologic treatment: explanation and elaboration. Annals of Internal Medicine 2008;148(4):295-309. - PubMed
Bradley 2012
    1. Bradley JM, Madge S, Morton AM, Quittner AL, Elborn JS, Allied Health and Nursing Professions Working Group, European Cystic Fibrosis Society. Cystic fibrosis research in allied health and nursing professions. Journal of Cystic Fibrosis 2012;11(5):387-92. - PubMed
Cohen 1992
    1. Cohen J. Quantitative Methods in Psychology: A Power Primer. Psychological Bulletin 1992;112(1):155-159. - PubMed
Deeks 2011
    1. Deeks J, Higgins J, Altman D. Chapter 9 Analysing data and undertaking meta-analysis. In: Higgins JPT, Green S, editors(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The CochraneCollaboration, 2011. Available from www.cochrane-handbook.org, 2011.
DiMatteo 2000
    1. DiMatteo M, Lepper H, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Arch Intern Med 2000;160(14):2101-2107. - PubMed
DiMatteo 2002
    1. DiMatteo M, Giordani P, Lepper H, Croghan TW. Patient adherence and medical treatment outcomes: a meta-analysis. Medical Care 2002;40(9):794-811. - PubMed
Dodge 2007
    1. Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK: 1947-2003. European Respiratory Journal 2007;29:522-526. - PubMed
Eakin 2011
    1. Eakin MN, Bilderback A, Boyle MP, Mogayzel PJ, Riekert KA. Longitudinal association between medication adherence and lung health in people with cystic fibrosis. Journal of Cystic Fibrosis 2011;10:258-64. - PMC - PubMed
Eiser 1995
    1. Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Archives of Disease in Childhood 1995;72(4):302-7. - PMC - PubMed
FitzSimmons 1993
    1. FitzSimmons SC. The changing epidemiology of cystic fibrosis. Journal of Pediatrics 1993;122(1):1-9. - PubMed
Goldbeck 2011b
    1. Goldbeck L, Besier T, Hinz A, Singer S, Quittner AL, TIDES Group. Prevalence of symptoms of anxiety and depression in German patients with cystic fibrosis. Chest 2010;138(4):929-36. - PubMed
Harter 1985
    1. Harter S. Manual: Self-perception profile for children. Denver: CO: University of Denver, 1985.
Harter 1986
    1. Harter S. Manual: Social support scale for children. Denver: CO: University of Denver, 1986.
Hazel 2006
    1. Hazel R. The psychosocial impact on parents of tube feeding their child. Paediatric Nursing 2006;18(4):19-22. - PubMed
Higgins 2011b
    1. Higgins JPT, Altman DG. Chapter 8: Assessing risk of bias in included studies. In: Higgins JPT, Green S, editors(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The CochraneCollaboration, 2011. Available from www.cochrane-handbook.org., 2011.
Hodges 2011
    1. Hodges LJ, Walker J, Kleiboer AM, Ramirez AJ, Richardson A, Velikova G, et al. What is a psychological intervention? A metareview and practical proposal. Psychooncology 2011;20(5):470-8. - PubMed
Ilfeld 1976
    1. Ilfeld F. Further validation of a psychiatric symptom index in a normal population. Psychological Reports 1976;39:1215-8.
Kerem 2005
    1. Kerem E, Conway S, Elborn S, Heijerman H. Standards of care for patients with cystic fibrosis: a European consensus. Journal of Cystic Fibrosis 2005;41:7-26. - PubMed
Kessler 2012
    1. Kessler RC, Petukhova M, Sampson NA, Zaslavsky AM, Wittchen HU. Twelve-month and lifetime prevalence and lifetime morbid risk of anxiety and mood disorders in the United States. International Journal of Methods in Psychiatric Research 2012;21(3):169-84. - PMC - PubMed
Lavigne 1992
    1. Lavigne JV, Faier-Routman J. Psychological adjustment to pediatric physical disorders: A meta-analytic review. Journal of Pediatric Psychology 1992;17(2):133-58. - PubMed
McNair 1971
    1. McNair DM, Lorr M, Droppleman LF. POMS Profile of Mood States. San Diego: Educational and Industrial Testing Service, 1971.
McNair 1992
    1. McNair D M, Lorr M, Droppleman LF. Revised manual for the Profile of Mood States. San Diego: CA: Educational and Industrial Testing Services, 1992.
Miller 1999
    1. Miller DL, Jelalian E, Stark LJ. Cystic Fibrosis. In: Goreczny AJ, Hersen M, editors(s). Handbook of Pediatric and Adolescent Health Psychology. First edition. Boston: Allyn and Bacon, 1999.
Miroballi 2012
    1. Miroballi Y, Garber E, Jia H, Zhou JJ, Alba L, Quittell LM, et al. Infection control knowledge, attitudes, and practices among cystic fibrosis patients and their families. Pediatric Pulmonology 2012;47(2):144-52. - PubMed
Modi 2006
    1. Modi AC, Lim CS, Yu N, Geller D, Wagner MH, Quittner AL. A multi-method assessment of treatment adherence for children with cystic fibrosis. Journal of Cystic Fibrosis 2006;5:177-85. - PubMed
Modi 2010
    1. Modi AC, Cassedy AE, Quittner AL, Accurso F, Sontag M, Koenig JM, et al. Trajectories of adherence to airway clearance therapy for patients with cystic fibrosis. Journal of Pediatric Psychology 2010;35:1028-37. - PubMed
Moher 2001
    1. Moher D, Schulz KF, Altman DG. The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials. Lancet 2001;357:1191-4. - PubMed
O'Connor 1995
    1. O'Connor AM. Validation of a decisional conflict scale. Medical Decision Making 1995;15(1):25-30. - PubMed
Oliver 2004
    1. Oliver MR, Heine RG, Ng CH, Volders E, Olinsky A. Factors affecting clinical outcome in gastrostomy-fed children with cystic fibrosis. Pediatric Pulmonology 2004;37:324-29. - PubMed
Pai 2006
    1. Pai AL, Drotar D, Zebracki K, Moore M, Youngstrom E. A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment. Journal of Pediatric Psychology 2006;31(9):978-88. - PubMed
Pearson 1991
    1. Pearson DA, Pumariega AJ, Seilheimer DK. The development of psychiatric symptomatology in patients with cystic fibrosis. Journal of the American Academy of Child & Adolescent Psychiatry 1991;30(2):290-7. - PubMed
Plante 2001
    1. Plante WA, Lobato D, Engel R. Review of group interventions for pediatric chronic conditions. Journal of Pediatric Psychology 2001;26(7):435-53. - PubMed
Prchal 2009
    1. Prchal A, Landolt MA. Psychological interventions with siblings of pediatric cancer patients: a systematic review. Psychooncology 2009;18(12):1241-51. - PubMed
Quittner 1992a
    1. Quittner AL, DiGirolamo AM, Michel M, Eigen H. Parental Response to Cystic Fibrosis: A Contextual Analysis of the Diagnosis Phase. Journal of Pediatric Psychology 1992;17(6):683-704. - PubMed
Quittner 1992b
    1. Quittner AL, Opipari LC, Regoli MJ, Jacobsen J, Eigen H. The impact of caregiving and role strain on family life: Comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology 1992;37(4):275-90.
Quittner 1998
    1. Quittner AL, Espelage DL, Opipari LC, Carter B, Eid N, Eigen H. Role strain in couples with and without a child with a chronic illness: Associations with marital satisfaction, intimacy, and daily mood. Health Psychology 1998;17(2):112-24. - PubMed
Quittner 2008
    1. Quittner AL, Barker DH, Snell C, Grimley ME, Marciel K, Cruz I. Prevalence and impact of depression in cystic fibrosis. Current Opinion in Pulmonary Medicine 2008;14:582-8. - PubMed
Quittner 2012b
    1. Quittner AL. Setting Up a Multi-National Trial: Lessons Learned in the TIDES study. Paper presented at the European Cystic Fibrosis Society Conference, Dublin, Irl. http://www.ecfs.eu/files/webfm/webfiles/File/AHP_Nursing%20Research/Dubl... (accessed 05 December 2012).
Rapoff 2010
    1. Rapoff M. Adherence to Pediatric Medical Regimens. 2nd ed. Issues in Clinical Child Psychology edition. New York: Springer Science+Business Media, 2010.
Sansom‐Daly 2012
    1. Sansom-Daly UM, Peate M, Wakefield CE, Bryant RA, Cohn RJ. A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychology 2012;31(3):380-93. - PubMed
Savage 2011
    1. Savage E, Beirne PV, Ni Chroinin M, Duff A, Fitzgerald T, Farrell D. Self-management education for cystic fibrosis. Cochrane Database of Systematic Reviews 2011, Issue 7. [DOI: 10.1002/14651858.CD007641.pub2] - DOI - PubMed
Seitz 2009
    1. Seitz DC, Besier T, Goldbeck L. Psychosocial interventions for adolescent cancer patients: a systematic review of the literature. Psychooncology 2009;18(7):683-90. - PubMed
Smith 2010
    1. Smith BA, Modi AC, Quittner AL, Wood BL. Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatric Pulmonology 2010;45:756-63. - PubMed
Spielberger 1970
    1. Spielberger CD, Gorsuch RC, Lushene RE. The State Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychological Press, 1970.
Spielberger 1973
    1. Spielberger CD. State Trait Anxiety Inventory for Children. Palo Alto, CA: Consulting Psychological Press, 1973.
Spitzer 1994
    1. Spitzer R, Williams J, Kroenke D, Linzer M, deGruy F, Hahn S, et al. Utility of a new procedure for diagnosing mental disorders in primary care: The PRIME-MD 1000 study. JAMA 1994;272(22):1749-55. - PubMed
Stark 1995
    1. Stark LJ, Jelalian E, Miller DL. Cystic Fibrosis. In: Roberts MC, editors(s). Handbook of Pediatric Psychology. 2nd edition. New York: Guildford Press, 1995.
Stern 2012
    1. Sens B, Stern M. Qualitaetssicherung Mukoviszidose - Ueberblick ueber den Gesundheitszustand der Patienten 2011. Bad Honnef: Hippocampus Verlag, 2012.
Sumner 1994
    1. Sumner G, Spietz A. Caregiver/parent-child interaction teaching manual. Seattle, WA: NCAST Publications, 1994.
Tsui 1990
    1. Tsui LC. Population Analysis of the Major Mutation in Cystic Fibrosis. Human Genetics 1990;85(4):391-445. - PubMed
Uman 2013
    1. Uman LS, Birnie KA, Noel M, Parker JA, Chambers CT, McGrath PJ, Kisely SR. Psychological interventions for needle-related procedural pain and distress in children and adolescents. Cochrane Database of Systematic Reviews 2013, Issue 10. [DOI: 10.1002/14651858.CD005179.pub3] - DOI - PubMed
US Patient Registry Annual Data Report 2010
    1. US Patient Registry Anual Data Report 2010. http://www.cff.org/UploadedFiles/LivingWithCF/CareCenterNetwork/PatientR... (accessed 06 August 2012).
Van Biervliet 2004
    1. Van Biervliet S, De Waele K, Van Winckel M, Robberecht E. Percutaneous endoscopic gastrostomy in cystic fibrosis: patient acceptance and effect of overnight tube feeding on nutritional status. Acta Gastroenterol Belg 2004;67(3):241-4. - PubMed
Walker 1991
    1. Walker LS, Greene JW. The functional disability inventory: Measuring a neglected dimension of child health status. Journal of Pediatric Psychology 1991;16(1):39-58. - PubMed
Ware 1993
    1. Ware J, Snow K, Kosinski M, Gandek B. SF-36 Health Survey: Manual and interpretation guide. The Health Institute, New England Medical Center 1993.
WHO 2003
    1. World Health Organisation. Adherence to long term therapies: evidence for action. Geneva: WHO, 2003.
Wittchen 2011
    1. Wittchen HU, Jacobi F, Rehm J, Gustavsson A, Svensson M, Joensson B, et al. The size and burden of mental disorders and other disorders of the brain in Europe 2010. European Neuropsychopharmacology 2011;21(9):655-79. - PubMed
Yorke 2005
    1. Yorke J, Fleming SL, Shuldham C. Psychological interventions for children with asthma. Cochrane Database of Systematic Reviews 2005, Issue 4. [DOI: 10.1002/14651858.CD003272.pub2] - DOI - PMC - PubMed
Yorke 2006
    1. Yorke J, Fleming SL, Shuldham C. Psychological interventions for adults with asthma. Cochrane Database of Systematic Reviews 2006, Issue 1. [DOI: 10.1002/14651858.CD002982.pub3] - DOI - PMC - PubMed

References to other published versions of this review

Glasscoe 2003
    1. Glasscoe CA, Quittner AL. Psychological interventions for cystic fibrosis. Cochrane Database of Systematic Reviews 2003, Issue 3. [DOI: 10.1002/14651858.CD003148.pub2] - DOI - PubMed

Publication types