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The systematic development of interventions to change health behaviours that are linked to morbidity and mortality is a key priority area for the discipline of health psychology. There is, however, a gap in the provision of interventions to change behaviour and improve health outcomes in rare diseases, although the behaviours (e.g., photoprotection) and outcomes (e.g., avoidance of skin cancer) may not be unique to the disease. A rare disease is one that affects fewer than five individuals per 10,000 in the general population (European Commission, 2008), but some may affect far fewer people. A patient survey revealed that perceived unmet needs included the absence or poor availability of social and psychological support (Rare Disease UK, 2013). A report on adherence in rare diseases further suggested that interventions to improve self-management were needed, and should address perceptual (e.g., the need for treatment, benefits, side effects), psychological (e.g., depression, coping), and practical barriers (e.g., forgetting, routines; Cooper & Clatworthy, 2016). Despite this, a PubMed search of randomized controlled trials (RCTs) of non-pharmacological interventions in 6,632 recognized rare diseases revealed only one such trial (see Kwakkenbos et al., 2013). Together, these sources emphasize the urgent need for the development, evaluation, and dissemination of behavioural and psychological interventions to support people with rare diseases. Here, we summarize the key challenges faced by intervention developers in rare diseases and, using xeroderma pigmentosum (XP) as a case example, propose solutions to these challenges by distinguishing between the novel aspects of rare diseases and those shared with more common problems.

british journal of health psychology

Challenges and proposed solutions for formative research to inform systematic intervention development in rare and unstudied conditions: The case example of Xeroderma Pigmentosum