Evaluating the feasibility of delivering a pain management programme for adults living with sickle cell disease

Abstract

Background: Pain is the prominent feature of sickle cell disease (SCD) and negatively affects quality of life. Delivery of pain management programmes (PMPs) has been suggested in clinical guidelines for pain management in SCD; however, further evidence of the feasibility and effectiveness of PMPs in this population is needed. This study explored the feasibility of delivering a sickle cell pain management programme (SCPMP) for adults within a haemoglobinopathies service.

Methods: A single arm, repeated-measures observational design was used to determine feasibility of delivering the SCPMP at one study site. Primary feasibility outcomes were recruitment, completion of treatment and outcome measures, satisfaction, credibility and acceptability to participants. Secondary feasibility outcomes were treatment outcomes and processes, frequency of vaso-occlusive crisis (VOC) and healthcare utilisation.

Results: Four of five feasibility criteria were met. Annual recruitment of eight participants to a SCPMP was not achieved. Twenty-nine people began a SCPMP during the study period. Twenty-five (86.2%) participants attended ≥5/8 sessions and 21(84%) programme completers provided all end of programme questionnaires. Mean scores of >7 on ten-point scales were seen across satisfaction and credibility questions. At least moderate (Hedges g >0.5) effect sizes were seen in pre-post SCPMP measures of pain interference, anxiety, depression, self-efficacy, pain-related worry and acceptance. A small (Hedges g 0.4) effect size was seen in HRQoL. Following SCPMP attendance, mean frequency of self-reported VOC and hospital admissions reduced.

Conclusions: This study suggests that, given an adequate source of referrals, a SCPMP is feasible to deliver and appears acceptable and credible to participants. Exploration of influences on recruitment, such as barriers to group interventions, would be illuminating, prior to investigating feasibility of an adequately powered randomised-controlled trial.

Keywords: chronic pain; pain management programme; persistent pain; sickle cell; sickle cell disease.

Figure 1.

Referrals to Red Cell Pain Management Service during study period. Note: DNA = Did Not Attend; UTA = Unable To Attend; 1/12 = follow-up 1 month after completion of SCPMP; 6/12 = follow-up 6 months after completion of SCPMP; * UTA/DNA SCPMP n = 20 did not start the SCPMP during the study period and may have accessed 1:1 input, ceased involvement with the service or accessed the SCPMP after the study period; ** Primary feasibility questionnaires included credibility, satisfaction and acceptability scales and open-ended treatment experience questions; *** Secondary feasibility questionnaires included Brief Pain Inventory (Cleeland and Ryan, 1994), Hospital Anxiety and Depression Scale (Zigmond and Snaith, 1983), EQ5D5L (Herdman et al., 2011), Pain Self-efficacy Questionnaire (Nicolas, 2007) Pain Catastrophising Scale (Sullivan et al., 1995), Chronic Pain Acceptance Questionnaire) (Fish et al., 2010); **** Nb. Primary feasibility questionnaires were not included at this timepoint.

Figure 2.

Recruitment to the SCPMP during the study period.

Figure 3.

Acceptability, satisfaction and credibility of intervention at post-PMP (n = 23) and 6 month follow-up (FU; n = 15) according to meeting participants’ expectations of better pain management (‘Expectations’; 0 = ‘Not at all’, 10 = ‘Very much so’), satisfaction that the treatment programme helps manage their pain (‘Satisfaction’; 0 = ‘Not at all’, 10 = ‘Very much so’), feelings about spending the rest of their lives with the present symptoms (‘Symptoms’; 0 = ‘Not at all OK’, 10 = ‘Totally OK’), and agreement that the PMP is useful for someone with sickle cell disease (‘PMP useful’; 0 = ‘Not at all’, 10 = ‘Very much so’). Error bars represent 95% confidence intervals.