Preliminary evaluation of the reliability and validity of the Shame and Stigma Scale in head and neck cancer

Kissane, David W.; Patel, Snehal G.; Baser, Raymond E.; Bell, R. Bryan; Farberov, Maria; Ostroff, Jamie S.; Li, Yuelin; Singh, Bhuvanesh; Kraus, Dennis H.; Shah, Jatin P.

doi:10.1002/hed.22943

Cited by 89 publications

(115 citation statements)

References 77 publications

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“…Body image disturbance is associated with disfigurement [73], such as amputation, the presence of a visible scar, or an abnormal gait pattern. Maladaptation to a disturbed body image results in shame, which has been described as an affective state in which a sense of disgrace, dishonor, or humiliation may generate a desire to cover oneself [49]. Research on head and neck cancer patients suggests that body image disturbance is associated with mood disturbance, psychological distress, impaired social interactions, and poorer reported QoL [49, 72].…”

Section: Discussionmentioning

confidence: 99%

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Identifying the Prevalence, Trajectory, and Determinants of Psychological Distress in Extremity Sarcoma

Tang

Castle

Choong

2015

Sarcoma

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Objective. Extremity sarcoma (ES) is a rare cancer that presents with unique challenges. This study was performed to identify the prevalence, trajectory, and determinants of distress and characterise sources of stress in this cohort. Methods. Consecutive patients with ES were prospectively recruited between May 2011 and December 2012. Questionnaires were administered during initial diagnosis and then six months and one year after surgery. Results. Distress was reported by about a third of our cohort and associated with poorer physical function, poorer quality of life, and pain. In addition to fears regarding mortality and life role changes, the most common sources of stress were centered on dissatisfaction with the healthcare system, such as frustrations with a lack of communication with the hospital regarding appointments and lack of education regarding management and outcomes. Conclusions. Psychological distress presents early in the cancer journey and persists up to one year after surgery. Distress is associated with negative outcomes. Active screening and effective interventions are necessary to improve outcomes. Sources of stress have been identified that may be amenable to targeted interventions.

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Section: Discussionmentioning

confidence: 99%

“…The Shame and Stigma Scale (SSS) was developed in 2013 by Kissane et al [49] for use to assess the level of an individual's shame of their appearance, their sense of stigma, regret, and concerns with speech and social interactions. This was developed for use with oral squamous cell carcinoma patients.…”

Section: Methodsmentioning

confidence: 99%

Identifying the Prevalence, Trajectory, and Determinants of Psychological Distress in Extremity Sarcoma

Tang

Castle

Choong

2015

Sarcoma

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“…Social well‐being was assessed using the Functional Assessment of Cancer Therapy—General Questionnaire (FACT‐G) (range 0‐24), with a cut‐off of ≤16 interpreted as indicating poor social well‐being . To ascertain LC stigma, we used the Sense of Stigma Scale, which has been validated among HNC patients (range 0‐100), with 0 as the lowest possible perceived stigma …”

Section: Methodsmentioning

confidence: 99%

Psychological distress in lung cancer survivors at least 1 year after diagnosis—Results of a German multicenter cross‐sectional study

et al. 2018

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Objective Despite the high incidence of lung cancer, little is known about distress in lung cancer survivors and patients who have survived diagnose for at least 1 year. We investigated distress prevalence and associated factors. Methods We performed a multicenter (n = 6 hospitals) cross‐sectional study. Data were collected using medical records, questionnaires, and a telephone interview. Distress was measured with the Patient Health Questionnaire (PHQ‐4). Odds ratios (OR) for factors potentially associated with distress were calculated using multivariable logistic regression. Results We included 561 complete case participants with a mean time since diagnosis of 4.4 years. Nineteen percent of them reported depression and 19% anxiety; 26% had 1 or both. Woman had nearly 2‐times the odds of being distressed than men (OR 1.92). Participants with UICC stage II or III at diagnosis had lower odds of being distress compared with stage I (ORs 0.41, 0.44). Participants in current treatment were less likely to be anxious or depressed than those off treatment (OR 0.32). Those with self‐reported progressing disease had 3‐times the odds of distress than people in complete remission (OR 3.00). Time since diagnosis, pain, dyspnea, lung cancer stigma as well as decreased physical functioning were related to increased distress (ORs per unit increase 0.90, 1.02, 1.03, 1.05, and 0.9, respectively). Conclusions With a quarter of patients affected, psychological distress is a common problem in this population. Being off treatment does not imply less distress. People with poor physical functioning and pain are especially affected. Treating these symptoms is therefore very important.

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“…A recent retrospective Dutch study of 85 head and neck survivors reported that oral dysfunction, loss of appetite, deteriorated social functioning, and high levels of anxiety were barriers for head and neck cancer survivors to return to work after treatment . Some of the treated patients with head and neck cancer are affected by reduced self‐esteem, social isolation, depression, and other mental disorders . How these psychosocial late effects might influence the employment status of head and neck cancer survivors is unknown.…”

Section: Introductionmentioning

confidence: 99%

Employment pathways and work‐related issues in head and neck cancer survivors

et al. 2014

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Preliminary evaluation of the reliability and validity of the Shame and Stigma Scale in head and neck cancer

Abstract: Further validation studies are worthwhile to confirm this factor structure, reliability, and validity, and generalizability to all head and neck cancers.

Cited by 89 publications

References 77 publications

Identifying the Prevalence, Trajectory, and Determinants of Psychological Distress in Extremity Sarcoma

Identifying the Prevalence, Trajectory, and Determinants of Psychological Distress in Extremity Sarcoma

Psychological distress in lung cancer survivors at least 1 year after diagnosis—Results of a German multicenter cross‐sectional study

Employment pathways and work‐related issues in head and neck cancer survivors

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