Patients with Chronic Rare Conditions Feel Unsupported

Rare Daily Staff

Patients with chronic rare disease do not feel they receive adequate support in a range of areas for their psycho-social wellbeing, according to the first study to assess supportive care needs quantitatively and qualitatively among this population.

The study, conducted by researchers at the University Medical Center Hamburg-Eppendorf and published in the Orphanet Journal of Rare Disease, is the first study aimed at investigating supportive care needs in patients with different rare chronic diseases across a broad range of areas including health system and information, physical needs, patient care, sexuality, and psychological needs.

The results were based on responses from 304 participants at least 16 years of age with 81 different rare diseases. More than 80 percent of the respondents were female. The study relied on both a quantifiable survey as well as open-ended questions. It used a survey of supportive care needs validated in cancer patients and a reference sample of cancer patients as a comparator.

In all five areas the researchers explored: health system and information, psychological needs, physical and daily living, patient care and support, and sexuality, patients with rare diseases expressed greater needs than did patients with cancer.

The majority of participants reported that they do not feel sufficiently socially supported. Patients sought support from personal contacts, including partners, family members and self-help groups, rather than medical professionals.

Participants expressed a desire for better information on the disease for themselves, their spouses, careers, and the public. They hope that better public education would allow others to better understand them and not label them as being handicapped.

In addition, the study found that respondents wished they had better access to self-help and contact to other patients affected by the same condition. In particular, they wanted better information from their physicians after a diagnosis and wanted access to an online forum for the illness, or an email address or phone number of someone with the same condition.

The participants also expressed the need for support in everyday life tasks and to facilitate job-related circumstances, such as flexible work hours to attend medical appointments. And they expressed the desire for greater support of their sexual needs through receiving information about sexual relationships.

The authors note that the sample does not reflect a representative picture of patients with rare diseases. It recruited participants for the study through outpatient clinics, patient organizations, and self-help groups for rare diseases. The researchers said it is likely that it reached patients who are well integrated into care structures. Patients with rare diseases for whom there are no patient associations or specialist clinics available may have even greater support needs,” the researchers wrote.