Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM).

PURPOSE: The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma-the Sarcoma Assessment Measure (SAM). METHODS AND RESULTS: The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13-82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 'items' which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of < .33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four. CONCLUSION: SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients.

A Qualitative Study of the Factors Influencing Patients' Experience of Soft Tissue Sarcoma in the United Kingdom.

BACKGROUND: Treatment of soft tissue sarcoma frequently involves extensive surgery, loss of mobility, and complex rehabilitation programs. Poorer patient-reported outcomes are reported in comparison to those from patients with other cancer types. Understanding patient experience is therefore important to support patients and improve care. OBJECTIVE: The aim of this study was an in-depth exploration of patients' experience of being diagnosed with soft tissue sarcoma. METHODS: Semistructured interviews and focus groups were conducted with 68 patients with soft tissue sarcoma (59% female; aged 23-82 years). These were analyzed using adapted framework analysis. RESULTS: Two overarching themes explained the factors influencing patients' experiences: individual and social factors to manage the impact of soft tissue sarcoma; and context and processes of care. Access to professionals with sarcoma expertise and services in specialist hospitals had an impact on patients' well-being. Lack of access to specialist services and coordinated care were associated with worse experiences. These were influenced by age and support from family/friends/other patients and were crucial in patients' adaptation to living with and beyond a sarcoma diagnosis. CONCLUSION: We describe factors that both negatively and positively influenced the experience of patients with soft tissue sarcoma. Access to specialist soft tissue sarcoma and rehabilitation services and support tailored to patients' age and disease trajectory are needed to improve these experiences. IMPLICATION FOR PRACTICE: Nurses are important for helping patients manage the long-term effects and directing them to supportive care services. Rehabilitation services need to be available and easily accessible.

Psychological adaptation and recovery in youth with sarcoma: a qualitative study with practical implications for clinical care and research.

OBJECTIVES: This study explored factors that play a role in psychological adaptation and recovery of young people with sarcoma. DESIGN: Qualitative study. SETTING: National Health Service hospitals in the UK. METHODS: Using purposive sampling, participants were recruited for semistructured interviews over the telephone or face to face in order to answer questions about how cancer impacted various domains of their life. Data were analysed using a framework approach. RESULTS: Thirty participants, aged 15-39 years with primary sarcoma diagnosis provided in-depth accounts of their experience. Emerging themes from the interviews were grouped into two overarching themes that relate to one's adaptation to illness: individual level and environmental level. The qualitative nature of our study sheds light on meaningful connections between various factors and their role in one's psychological adaptation to sarcoma. We devised a visual matrix to illustrate how risk and protective factors in adaptation vary between and within individuals. CONCLUSIONS: This study demonstrates that young people with sarcoma report an array of both positive and negative factors related to their illness experience. The route to recovery is a multifactorial process and a one-size-fits-all approach to psychosocial care proves inadequate. We propose that moving beyond the latent constructs of resilience and psychopathology towards a dynamic model of psychological adaptation and recovery in this population can result in optimisation of care. We offer some recommendations for professionals working with young people with sarcoma in clinic and research.

A Critical Review of the Impact of Sarcoma on Psychosocial Wellbeing.

BACKGROUND: Previous reviews of outcomes in specific sarcoma populations suggest patients have poor quality of life. In most of these reviews, there is a predominant focus on physical function rather than psychosocial outcome. The aim of this review was to describe the psychosocial impact of diagnosis and treatment on patients with all types of sarcoma. METHODS: Searches were conducted through six electronic databases for publications of any study design using a validated patient-reported outcome measure reporting the psychosocial impact in this population. RESULTS: Eighty-two studies fulfilled the inclusion criteria. Most (65%) were assessed of being of reasonable quality. The most common aspect of psychosocial wellbeing measured was quality of life (80%). Due to the heterogeneity of methods, outcomes, and populations, it was not possible to make definitive conclusions. It seems there is an improvement in the physical aspects of quality of life over time but not in psychosocial function or mental health. There was no change in mental health scores, but patients reported an improvement in adjusting to normal life. There are no differences according to the type of surgery patients receive, and psychosocial outcomes tend to be poorer than the general population. There is no consistency in identifying the factors that predict/influence psychosocial wellbeing. CONCLUSION: The published literature does not provide a clear understanding of the impact of sarcoma diagnosis and treatment on psychosocial wellbeing. Instead, the review demonstrates a need for well-designed studies in this area and a more consistent approach to the measurement of patient-reported outcomes, which include psychosocial domains. Recommendations for future research have been proposed.

Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

OBJECTIVE: The aim of this study is to explore the experiences of patients with primary bone cancer. DESIGN: Qualitative study design using semistructured interviews and focus groups. SETTING: Hospitals across the UK and recruitment through UK sarcoma charities and support groups. METHODS: Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis. PARTICIPANTS: Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%). RESULTS: The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent. CONCLUSIONS: This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.