People with Raynaud’s phenomenon (RP) experience poorer mental health and quality of life than the general population, and there is limited evidence for treatment options in RP. The Common Sense Model of illness representations (CSM) is a well-established theoretical model, which has not yet been robustly investigated in RP, but may provide potential avenues for psychological interventions with the ability to explore perceptions and beliefs, such as cognitive behavioural therapy (CBT). The study aims were to investigate illness perceptions and examine the relationship between illness perceptions and symptom severity and quality of life in RP to explore a theoretical basis for potential treatment avenues. A cross-sectional online questionnaire design was employed and 169 adults with RP (primary or secondary) were analysed. Illness perceptions significantly differed between primary and secondary RP types on all but one domain (p < .05). Hierarchical multiple regressions indicated that illness perception subscales made a significant unique contribution to the models explaining 65% variance in symptom severity (R2 = .65, p < .001) and 30% variance in quality of life (R2 = .30, p < .001). This novel study provides preliminary evidence regarding the applicability of the CSM to RP in a clinically meaningful way. CBT, which can specifically target illness perceptions within a wider psychological formulation, may be helpful for individuals with RP who are experiencing psychological distress in relation to symptom severity. Further work is needed to develop outcome measures specific to RP and tailor interventions to manage distress and impaired quality of life.

1. (1) The Common Sense Model is applicable and relevant to Raynaud’s phenomenon (RP) and there are important differences between illness perceptions in those with primary and secondary RP subtypes.

2. (2) Findings show that illness-specific cognitions make a significant contribution to the variance in symptom severity and quality of life in those with both subtypes of RP, which has notable implications for the assessment, formulation and treatment of psychological difficulties in RP.

3. (3) This offers a basis for further replication and development and adaptation of an intervention for this group, drawing on the evidence base for long-term conditions.

Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.

Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.

Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.

This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.