The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature

Winnette, Randall; Hess, Lisa M.; Nicol, Steven J.; Tai, D. F.; Copley-Merriman, Catherine

doi:10.1007/s40271-016-0200-1

Cited by 35 publications

(38 citation statements)

References 24 publications

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“…Annually, approximately 850 new cases of sarcoma are diagnosed in Australia, representing 1% of cancer diagnoses . Sarcomas have a burden disproportionate to their incidence, due to their bimodal distribution of incidence, treatment‐related morbidity, and lethality . On average, 17 life years are lost per patient, with rates of mortality estimated at 50%…”

Section: Introductionmentioning

confidence: 99%

“…There is, however, no sarcoma‐specific HRQoL instrument available, and little information regarding patient experiences of sarcoma. Previous systematic reviews have looked at HRQoL in patients with sarcoma but have focused on a specific sarcoma subtype, tumour location, or both. Thus, a comprehensive synthesis of the HRQoL literature for the broader sarcoma cohort is not currently available.…”

Section: Introductionmentioning

confidence: 99%

“…6,7 Sarcomas have a burden disproportionate to their incidence, due to their bimodal distribution of incidence, treatment-related morbidity, and lethality. [8][9][10] On average, 17 life years are lost per patient, with rates of mortality estimated at 50%. 9 Current best practice treatment for sarcoma includes a multidisciplinary approach, depending on the tumour type, grade, and location.…”

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confidence: 99%

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Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

et al. 2019

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Objective Health‐related quality of life (HRQoL), psychosocial distress, and unmet health needs are important patient‐reported outcomes (PROs) for patients with sarcoma treated with curative intent. Syntheses of data on these PROs in patients with sarcoma are limited. Methods A systematic review of peer‐reviewed literature published between 2007 and 2017 was conducted using five databases, guided by the PRISMA and Cochrane reporting guidelines. Results Of 7240 articles identified, 31 were included in this review. Compared with healthy individuals, patients with sarcoma frequently scored lower in physical and psychological HRQoL domains and experienced higher rates of self‐image issues, depression, and suicide. However, outcomes for patients with sarcoma were relatively comparable to those with other malignancies. Anxiety symptoms were more common in the diagnosis phase, while depressive symptoms were more common in the treatment phase. Patients who are older, female, and socially isolated often reported lower HRQoL. As a sarcoma‐specific HRQoL instrument is not available, and all studies have used generic instruments, key issues may have been omitted. Conclusion There are few studies reporting data for HRQoL, psychosocial issues, or unmet health needs in this population. A sarcoma‐specific HRQoL instrument is needed to accurately describe outcomes in this population. There is a need for further qualitative research to conceptualise the HRQoL issues relevant to this population, against which to map existing HRQoL instruments and guide adaptation or creation of a new instrument.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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confidence: 99%

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Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

et al. 2019

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“…As a result, return to work (RTW) has become a possibility and an expectation for those still at a working age . Although the RTW experience of cancer survivors has been explored in general, the experience of people with specific and rare cancer diagnoses remains largely unexplored …”

Section: Introductionmentioning

confidence: 99%

Experiences of return to work after treatment for extremital soft tissue or bone sarcoma: Between distraction and leaving the disease behind

2020

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Objective: We aimed to explore the return to work (RTW) experience of individuals in remission from extremital sarcoma.Methods: Using a qualitative survey design, we asked sarcoma survivors about their RTW experiences after treatment. Seven men and eight women (n = 15), 43 years old in average, participated. The majority had soft tissue sarcoma (n = 14) and no amputations (n = 14). We analysed data thematically through an inductive approach.Results: Participants' motivation to RTW and their experiences of this transition could be understood under the main theme of "searching for distraction and wanting to leave the disease behind," followed by "problems of the new normal." RTW was the next step after treatment; however, being back at the same workplace/institution was challenging due to the interference of the effects of the disease and treatments and peer perceptions. In other subthemes, we identified that RTW was facilitated by different "signs of readiness," as well as by "motivating factors and the meaning of having an occupation."Conclusions: Readiness to RTW while primarily an autonomous decision can also be guided by third parties, including treating physicians. RTW can be challenging, since changes in performance as well as comments from peers become a constant reminder of the status prior to the illness. Given that RTW helps distract from the disease, these reminders can be confronting and highlight the role of health professionals and employers in preparing survivors and peers to facilitate the RTW. K E Y W O R D S cancer, cancer survivors, oncology, psycho-oncology, psychosocial issues, return to work, sarcoma

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“…Psychological functioning is an important patient‐reported outcome (PRO) in quality of life, and PROs are important components of patient‐centered research and care 22,23 . Because sarcoma patients experience a high disease burden in respect to their incidence, 10,24 there is a need to develop novel tools, which will offer better holistic rehabilitation for patients with soft‐tissue sarcoma.…”

Section: Introductionmentioning

confidence: 99%

Psychological functioning, coping styles and their relationship to appraisal of physical limitations following invasive surgical procedures for soft‐tissue sarcoma: A qualitative study

Košir

Denis‐Larocque

Tsimicalis

et al. 2020

Journal of Surgical Oncology

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Background and Objectives: This study explored psychological functioning and coping styles in adult patients with soft-tissue sarcoma who underwent surgical procedures in a single expert sarcoma medical center in Canada.Methods: This is a qualitative study with three formats of data collection. The interview guide was based on theoretical health-related quality of life model. We began the investigation with 2 online and 2 in-person focus groups. Four individual semistructured interviews were added to further explore emerging themes. Data were analyzed using inductive thematic networks approach.Results: Twenty-eight adults (13 female, 24-75 years of age) participated. In the domain of psychological functioning we identified three main themes; changes in mood, worry, and body image concerns. In the domain of coping styles, we identified four adaptive coping styles; positive reframing and optimism, finding a purpose, being proactive, and using humor. Among the maladaptive coping styles, we found passive acceptance, and avoidance and denial.

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The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature

Cited by 35 publications

References 24 publications

Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review

Experiences of return to work after treatment for extremital soft tissue or bone sarcoma: Between distraction and leaving the disease behind

Psychological functioning, coping styles and their relationship to appraisal of physical limitations following invasive surgical procedures for soft‐tissue sarcoma: A qualitative study

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