The unmet needs of patients with sarcoma

Abstract

ObjectiveSarcoma is a rare cancer that imposes a significant burden on the lives of patients. Many survivors have long‐term disability as a result of treatment and the disease. Patients often experience functional issues, poorer mental health, reduced quality of life, and interpersonal issues. There is a need to explore the unmet needs of sarcoma patients as it is unclear how these issues are being addressed. The aim of this study was to explore the unmet needs of patients who have been diagnosed with sarcoma.MethodsThe participants were individuals previously diagnosed with a sarcoma (n = 22). Participants completed a semi‐structured interview about their unmet needs relating to sarcoma. The transcripts were analyzed using thematic analysis.ResultsFive overarching themes were identified: daily living, financial needs, lack of information, need for a community, and navigating the healthcare system. Participants reported a range of practical needs, including transport, limited understanding of their treatments, and financial issues. Participants also described a need to connect with people who had gone through similar experiences.ConclusionsSarcoma patients have fundamental needs that affect their capacity to live their life in the best possible way. Health services need to better facilitate sarcoma patients at each stage of their experience by providing individualized referrals, support, and coordination. Support interventions are needed to help patients adjust to sarcoma and to improve their quality of life as an outpatient. Connecting patients with sarcoma support groups may provide them with more relevant and intimate support.

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

“…Most participants wanted information and honesty, and also asked multiple questions. These findings support previous studies that reported a lack of information available at diagnosis and during treatment [ 13 ]. However, a few carers did not want to know what they described as “too much” and preferred to take it one step at a time.…”

“…This reflects previous work that found delays in diagnosis were common [ 7 ]. Younger patients may be unwilling to present their symptoms and their pain is often misattributed and assumed (by GPs, family members and patients) to be caused by lifestyle [ 13 ]. These delays and misdiagnoses need to be addressed, as early diagnosis is vital to reduce the need for radical surgeries [ 21 ], reduce distress [ 11 ] and to enhance chances of survival [ 22 ].…”

“…The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying [ 12 ]. Additionally, for many bereaved sarcoma carers, the death of their family member may have closely followed their diagnosis which can be emotionally painful [ 13 ]. Based on the World Health Organisation’s 2002 definition, in Australia palliative care is defined as: “… an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness.…”

The complexity of diagnosing sarcoma in a timely manner: perspectives of health professionals, patients, and carers in Australia

“…The 5-year post-diagnosis sarcoma survival rate is estimated to be approximately 60% in Western countries (such as the UK, US and Australia), ranging from about 90% survivorship for low grade lesions, to less than 50% survivorship for high grade tumours [5]. Patients experience a variety of unmet needs, including access to information, health services, psychosocial support, and financial support [6]. Ideally, sarcoma patients are managed by a multidisciplinary sarcoma specialist team, which may include receiving clinical management and support from a sarcoma nurse specialist (Weaver et al; manuscript under review).…”

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

“…Patients experience short‐ and long‐term functional issues as a result of the cancer and treatment 7 . The unmet needs of patients include a lack of information, financial support, psychosocial support and access to health services 8 . Due to the functionality issues and unmet needs in this population, patients may require higher levels of support from informal family carers 9 …”