Bridging the Knowledge Gap: Positive Impact of a Patient-Co-Created Bespoke Information Resource for Young People with Myeloproliferative Disorders

Myeloproliferative neoplasms (MPNs) pose unique challenges when diagnosed in younger people. The rarity of MPNs in adolescents and young adults (AYA) results in delayed diagnoses, confounded by a lack of age-specific guidelines. AYA patients face decades of managing MPNs alongside developmental milestones such as education, careers, and relationships. The absence of tailored support materials exacerbates these challenges.

Methods: A qualitative thematic analysis of social media (SM) content from a Young Persons’ MPN support group was conducted using NVivo software. Semi-structured group interviews provided deeper insights into the identified themes. Co-created tailored bespoke pilot information was developed, and feedback solicited then incorporated into a refined final patient information sheet (PIL). Following distribution, the impact of the resource on patients’ confidence regarding their condition was surveyed and analysed using MS Excel and NVivo.

Results:

1. Thematic Analysis: Key themes identified in the analysis of SM posts and semi-structured interviews incorporated into the PIL included lengthy routes to diagnosis, significant uncertainty regarding disease classification, and frequently discussed symptoms and side effects. A prevalent feeling of isolation was noted, mainly due to age disparities with the broader MPN population; the AYA SM patient group provided a much-needed sense of belonging. Patients expressed considerable uncertainty about future risks of disease progression and discussed the challenges of managing MPNs in daily life, including work, family, and social activities. Uncertainty about relationships and family planning was common, focusing on the impact of treatments on fertility and pregnancy. Emotional aspects of living with a chronic illness were frequently discussed, with participants sharing coping strategies and mutual support. Specific information gaps regarding education, career planning, and the financial implications of having a chronic malignancy (e.g., insurance, mortgages, and financial planning) were highlighted. Patients emphasized the need for greater clinician and caregiver awareness, including the stigmatizing effect of being labelled 'unusual' or 'different' due to their younger age. This sense of otherness underscores the need for a more nuanced and empathetic approach in patient care and communication.
2. Patient Information: 140 individuals interacted with our PIL. Most were diagnosed aged 25-34 (68/140) with 24 patients diagnosed before the age of 25, including three before their 16th birthday. The remaining 48 individuals were diagnosed between the ages of 35 and 40. Among respondents, 10.0% had experienced a progression in their diagnosis. Current or previous diagnoses were essential thrombocythemia (73.6%), polycythemia vera (25.0%), myelofibrosis (4.3%), and MPN-U (1.4%). Most (86.4%) respondents reported that the PIL would have been invaluable to them at diagnosis, and 87.0% reported increased confidence after interacting with the PIL, with a mean increase of 3.3 points in self-reported confidence (10-point scale). Those reporting lower increases highlighted additional areas not covered to prioritize for future work. A repeat thematic analysis of the survey's free text responses confirmed these areas of need and underscored the demand for tailored information. Extended themes of concern included life expectancy, challenges navigating diagnosis, miscommunication, and the need for detailed information on reproductive health, menstruation, pregnancy, and family planning. Concerns about healthcare professionals' lack of awareness and understanding regarding young patients were common, as was the pressure felt by patients to self-advocate vigorously to secure the specialist care needed.

Discussion: AYAs encounter unique challenges as they manage a chronic illness alongside key developmental milestones. Long-term side effects of treatments and uncertainty about disease progression significantly impact quality of life and psychosocial well-being. Addressing patient-voiced concerns through the creation of tailored PILs not only enhanced patient confidence by providing them with the necessary resources to plan for their future, but also empowered them to assist healthcare professionals in delivering better care for future AYA MPN patients.