Clinical Characteristics, Experiences, and Outcomes of Transgender Patients With Cancer

Burns, Zackory T.; Bitterman, Danielle S.; Perni, Subha; Boyle, Patrick J.; Guss, Carly E.; Haas‐Kogan, Daphne A.; Liu, Kevin X.

doi:10.1001/jamaoncol.2020.5671

Cited by 36 publications

(25 citation statements)

References 16 publications

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“…There is also little research on LGBTQI adolescent and young adult (AYA) experiences of cancer ( 18 ), other than two recent studies reporting higher rates of anxiety ( 19 , 20 ) and depression ( 20 ) in LGBTQ AYAs, compared to non-LGBTQ adolescent and young adult (AYAs). There is little research on psycho-social outcomes of TGD people with cancer ( 1 , 3 , 21 ), other than a recent study reporting higher rates of depression in TGD compared to cisgender people ( 22 ), and small scale qualitative research studies of TGD cancer survivorship experiences ( 8 , 23 , 24 ). This is also little research including LGBTQ people of color, migrants, and Aboriginal and Torres Strait Islander people ( 3 , 25 ).…”

Section: Introductionmentioning

confidence: 99%

LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness

Ussher

Allison²,

Perz³

et al. 2022

Front. Oncol.

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BackgroundThere is growing acknowledgement of the psycho-social vulnerability of lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer. The majority of research to date has focused on cisgender adults with breast or prostate cancer.Study AimThis study examined psycho-social factors associated with distress and quality of life for LGBTQI cancer patients and survivors, across a range of sexualities and gender identities, intersex status, tumor types, ages and urban/rural/remote location using an intersectional theoretical framework.Method430 LGBTQI people with cancer completed an online survey, measuring distress, quality of life (QOL), and a range of psycho-social variables. Participants included 216 (50.2%) cisgender women, 145 (33.7%) cisgender men, and 63 (14.7%) transgender and gender diverse (TGD) people. Thirty-one (7.2%) participants reported intersex variation and 90 (20%) were adolescents or young adults (AYA), aged 15-39. The majority lived in urban areas (54.4%) and identified as lesbian, gay or bisexual (73.7%), with 10.9% identifying as bisexual, and 10.5% as queer, including reproductive (32.4%) and non-reproductive (67.6%) cancers.ResultsForty-one percent of participants reported high or very high distress levels, 3-6 times higher than previous non-LGBTQI cancer studies. Higher rates of distress and lower QOL were identified in TGD compared to cisgender people, AYAs compared to older people, those who identify as bisexual or queer, compared to those who identify as lesbian, gay or homosexual, and those who live in rural or regional areas, compared to urban areas. Elevated distress and lower QOL was associated with greater minority stress (discrimination in life and in cancer care, discomfort being LGBTQI, lower outness) and lower social support, in these subgroups. There were no differences between reproductive and non-reproductive cancers. For the whole sample, distress and poor QOL were associated with physical and sexual concerns, the impact of cancer on gender and LGBTQI identities, minority stress, and lack of social support.ConclusionLGBTQI people with cancer are at high risk of distress and impaired QOL. Research and oncology healthcare practice needs to recognize the diversity of LGBTQI communities, and the ways in which minority stress and lack of social support may affect wellbeing.

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Section: Introductionmentioning

confidence: 99%

LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness

Ussher

Allison²,

Perz³

et al. 2022

Front. Oncol.

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“…AYAs require more support than older adults or younger children with cancer (Close et al, 2019). They have age-unique needs related to friendship (Fladeboe et al, 2021), employment (Guy et al, 2014), education (Parsons et al, 2012), health behaviors (Deleemans et al, 2021), sexuality (Abelman and Cron, 2020;Burns et al, 2021), and social and family issues (Kirchhoff et al, 2017). However, many of these needs are unmet (Zebrack et al, 2010;Warner et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Development and evaluation of the feasibility, validity, and reliability of a screening tool for determining distress and supportive care needs of adolescents and young adults with cancer in Japan

Hirayama¹,

Fujimori²,

Yanai³

et al. 2022

Pall Supp Care

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Objectives This study aims to (i) develop a screening tool for determining distress and supportive care needs of adolescent and young adult cancer patients (AYAs) based on the NCCN's Distress Thermometer and Problem List (DTPL), (ii) evaluate its feasibility, discriminant validity, and test–retest reliability in clinical settings, and (iii) report prevalence of distress and unmet needs. Method In the development phase, after translation of the Japanese version of the DTPL (DTPL-J) from English into Japanese and back translation, cognitive debriefing was performed. Items in the problem list were modified to better reflect AYAs’ concerns after interviews. The modified items were reviewed and accepted unanimously by healthcare professionals. In the feasibility phase, the DTPL-J for AYAs was used in a clinical setting for 3 months. Descriptive statistics of participants’ demographics, selected items, and DT scores were calculated to report prevalence of distress and unmet needs. Response and referral rates to experts were assessed to evaluate feasibility. Some items were compared with patient demographics to assess discriminant validity. Among the patients who responded at least twice, correlations between two consecutive screenings were assessed to evaluate test–retest reliability. Results The DTPL-J consisted of 49 items in five categories. Of 251 patients, 232 (92.4%) were provided the DTPL-J and 230 (91.6%) responded. Based on the DT cutoff of ≥4, 69 of 230 patients (30%) had high distress. Anxiety (n = 85, 36.6%) was the most commonly selected item. Primary nurses referred 45 (21.7%) patients to an attending physician or another expert. Referral rates after DTPL-J use were higher than rates before use, but the difference was not statistically significant (p = 0.06). The items compared were consistent with their social background. A positive correlation was observed between two responses for some items. Significance of results The feasibility, discriminant validity, and test–retest reliability of the tool were suggested.

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Approximately 0.5%-2.7% of the population identify as transgender and/or gender diverse (TGD); however, little is known about TGD pediatric and young adult patients with cancer. [1][2][3][4][5] To characterize out-

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mentioning

confidence: 99%

“…Patients were identified using International Classification of Diseases, 10th Revision codes and clinic notes from the Gender Multispecialty Service (GeMS) at BCH 6 or containing terms used to document TGD identity as previously described. 2 Clinic notes available in the medical record from 1990 to 2021 were reviewed, and all patients had completed cancer treatment. Table 1 summarizes cohort characteristics, including aspects of gender-affirming care (GAC).…”

mentioning

confidence: 99%

Clinical outcomes and considerations of gender‐affirming care for transgender and gender‐diverse pediatric and young adult patients with cancer

Kempf

Burns

Guss

et al. 2022

Pediatric Blood & Cancer

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Clinical Characteristics, Experiences, and Outcomes of Transgender Patients With Cancer

Cited by 36 publications

References 16 publications

LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness

LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness

Development and evaluation of the feasibility, validity, and reliability of a screening tool for determining distress and supportive care needs of adolescents and young adults with cancer in Japan

Clinical outcomes and considerations of gender‐affirming care for transgender and gender‐diverse pediatric and young adult patients with cancer

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