Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study

doi:10.1186/s13023-015-0324-8

. 2015 Sep 28:10:124.

doi: 10.1186/s13023-015-0324-8.

Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study

Marleen R van Walsem^{1

2}, Emilie I Howe^{3

4}, Kristin Iversen⁵, Jan C Frich^{6

7}, Nada Andelic^{8

9}

Affiliations

¹ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
² Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
³ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. emihow@ous-hf.no.
⁴ Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. emihow@ous-hf.no.
⁵ Centre for Rare Disorders, Oslo University Hospital, Rikshospitalet, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. kiversen@ous-hf.no.
⁶ Department of Health Management and Health Economics, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. jan.frich@medisin.uio.no.
⁷ Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. jan.frich@medisin.uio.no.
⁸ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. nadand@ous-hf.no.
⁹ Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. nadand@ous-hf.no.

PMID: 26411462
PMCID: PMC4585992
DOI: 10.1186/s13023-015-0324-8

Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study

Marleen R van Walsem et al. Orphanet J Rare Dis. 2015.

. 2015 Sep 28:10:124.

doi: 10.1186/s13023-015-0324-8.

Authors

Marleen R van Walsem^{1

2}, Emilie I Howe^{3

4}, Kristin Iversen⁵, Jan C Frich^{6

7}, Nada Andelic^{8

9}

Affiliations

¹ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
² Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
³ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. emihow@ous-hf.no.
⁴ Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. emihow@ous-hf.no.
⁵ Centre for Rare Disorders, Oslo University Hospital, Rikshospitalet, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. kiversen@ous-hf.no.
⁶ Department of Health Management and Health Economics, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. jan.frich@medisin.uio.no.
⁷ Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. jan.frich@medisin.uio.no.
⁸ Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. nadand@ous-hf.no.
⁹ Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway. nadand@ous-hf.no.

PMID: 26411462
PMCID: PMC4585992
DOI: 10.1186/s13023-015-0324-8

Abstract

Background: In order to plan and improve provision of comprehensive care in Huntington's disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.

Methods: Eighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients' needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.

Results: A high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).

Conclusions: Needs for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.

PubMed Disclaimer

Figures

**Fig. 1**
Flow chart illustrating patient recruitment process

**Fig. 2**
Bargraphs illustrating level of needs, provision and unmet needs for NPCS total, domain and subscale scores

See this image and copyright information in PMC

Cited by

Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial.
Thombs BD, Dyas L, Pépin M, Aguila K, Carrier ME, Tao L, Harb S, Malcarne VL, El-Baalbaki G, Peláez S, Sauve M, Hudson M, Platt RW; SPIN-SSLED Patient Advisory Team. Thombs BD, et al. BMJ Open. 2019 Nov 11;9(11):e029935. doi: 10.1136/bmjopen-2019-029935. BMJ Open. 2019. PMID: 31719073 Free PMC article.
Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study.
van Walsem MR, Howe EI, Andelic N, Frich JC. van Walsem MR, et al. BMC Prim Care. 2024 May 7;25(1):155. doi: 10.1186/s12875-024-02408-2. BMC Prim Care. 2024. PMID: 38714964 Free PMC article.
Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.
de Freitas C, Dos Reis V, Silva S, Videira PA, Morava E, Jaeken J. de Freitas C, et al. BMC Health Serv Res. 2017 Sep 26;17(1):682. doi: 10.1186/s12913-017-2625-1. BMC Health Serv Res. 2017. PMID: 28950866 Free PMC article.
An Australian Neuro-Palliative perspective on Huntington's disease: a case report.
Shah R, Lee SC, Strasser RB, Grossman C. Shah R, et al. BMC Palliat Care. 2021 Apr 1;20(1):53. doi: 10.1186/s12904-021-00744-z. BMC Palliat Care. 2021. PMID: 33794853 Free PMC article.
Health services utilization of Chinese patients with Huntington's disease: a cross-sectional study.
Ke H, Cao X, Song Y, Cao L. Ke H, et al. BMC Health Serv Res. 2021 Aug 12;21(1):806. doi: 10.1186/s12913-021-06826-1. BMC Health Serv Res. 2021. PMID: 34384423 Free PMC article.

See all "Cited by" articles

References

1. Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):22–30. doi: 10.1186/1750-1172-8-22. - DOI - PMC - PubMed
1. Turner-Stokes L, McCrone P, Jackson DM, Siegert RJ. The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open. 2013;3(2):1–11. doi: 10.1136/bmjopen-2012-002353. - DOI - PMC - PubMed
1. Aziz NA, Anguelova GV, Marinus J, Lammers GJ, Roos RA. Sleep and circadian rhythm alterations correlate with depression and cognitive impairment in Huntington’s disease. Parkinsonism Relat Disord. 2010;16(5):345–50. doi: 10.1016/j.parkreldis.2010.02.009. - DOI - PubMed
1. Bates G, Tabrizi S, Jones L. Huntington’s disease. 4. Oxford: Oxford University Press; 2014.
1. Petersen A, Gabery S. Hypothalamic and limbic system changes in Huntington’s disease. J Huntingtons Dis. 2012;1(1):5–16. - PubMed

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

LinkOut - more resources

Full Text Sources
Other Literature Sources
- scite Smart Citations
Medical
- MedlinePlus Health Information
Miscellaneous
- NCI CPTAC Assay Portal

[1] Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):22–30. doi: 10.1186/1750-1172-8-22. - DOI - PMC - PubMed

[2] Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):22–30. doi: 10.1186/1750-1172-8-22. - DOI - PMC - PubMed

[3] Turner-Stokes L, McCrone P, Jackson DM, Siegert RJ. The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open. 2013;3(2):1–11. doi: 10.1136/bmjopen-2012-002353. - DOI - PMC - PubMed

[4] Turner-Stokes L, McCrone P, Jackson DM, Siegert RJ. The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open. 2013;3(2):1–11. doi: 10.1136/bmjopen-2012-002353. - DOI - PMC - PubMed

[5] Aziz NA, Anguelova GV, Marinus J, Lammers GJ, Roos RA. Sleep and circadian rhythm alterations correlate with depression and cognitive impairment in Huntington’s disease. Parkinsonism Relat Disord. 2010;16(5):345–50. doi: 10.1016/j.parkreldis.2010.02.009. - DOI - PubMed

[6] Aziz NA, Anguelova GV, Marinus J, Lammers GJ, Roos RA. Sleep and circadian rhythm alterations correlate with depression and cognitive impairment in Huntington’s disease. Parkinsonism Relat Disord. 2010;16(5):345–50. doi: 10.1016/j.parkreldis.2010.02.009. - DOI - PubMed

[7] Bates G, Tabrizi S, Jones L. Huntington’s disease. 4. Oxford: Oxford University Press; 2014.

[8] Bates G, Tabrizi S, Jones L. Huntington’s disease. 4. Oxford: Oxford University Press; 2014.

[9] Petersen A, Gabery S. Hypothalamic and limbic system changes in Huntington’s disease. J Huntingtons Dis. 2012;1(1):5–16. - PubMed

[10] Petersen A, Gabery S. Hypothalamic and limbic system changes in Huntington’s disease. J Huntingtons Dis. 2012;1(1):5–16. - PubMed

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study

Affiliations

Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study

Authors

Affiliations

Abstract

Figures

Similar articles

Cited by

References

MeSH terms

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Miscellaneous

Abstract

Figures

Similar articles

Cited by

References

MeSH terms

Related information

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Miscellaneous