Background
Methods
Key Area 1: Medical and treatment outcomes
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In people with lung cancer are stigma-related negative self-relevant evaluations associated with late presentation for treatment?
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In people with lung cancer are stigma-related negative self-relevant evaluations associated with poor adherence to treatment?
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In people with lung cancer are stigma-related negative self-relevant evaluations associated with poorer survival?
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In people with lung cancer are nihilistic views about the cancer associated with late presentation for treatment?
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In people with lung cancer are nihilistic views about the cancer associated with poor adherence to treatment?
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In people with lung cancer are nihilistic views about the cancer associated with poorer survival?
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In medical professionals are stigma-related negative evaluations about lung cancer patients associated with patterns of treatment?
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In medical professionals are nihilistic views about lung cancer related to patterns of treatment?
Key Area 2: Psychosocial outcomes
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In people with lung cancer are stigma-related negative self-relevant evaluations associated with lower levels of psychosocial help seeking?
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In people with lung cancer are stigma-related negative self-relevant evaluations associated with greater psychosocial distress?
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In people with lung cancer are stigma-related negative self- relevant evaluations associated with poorer quality of life?
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In people with lung cancer are nihilistic views about the cancer associated with lower levels of psychosocial help seeking?
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In people with lung cancer are nihilistic views about the cancer associated with greater psychosocial distress?
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In people with lung cancer are nihilistic views about the cancer associated with poorer quality of life?
Key Area 3: Impacts of public health programs
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In people with lung cancer do anti-smoking public health campaigns contribute to stigma-related negative self evaluations?
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In people with lung cancer do anti-smoking public health campaigns contribute to nihilism views about lung cancer?
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Included lung cancer patients and/or partners or caregivers (either at least 80% of participants had lung cancer or were partners or caregivers of lung cancer patients, or there was a lung cancer specific sub-group analysis) OR included health professionals considering patients with lung cancer;
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Assessed lung cancer specific stigma or nihilism and included an outcome of interest – survival, delayed presentation, treatment adherence or refusal, patterns of care, psychological distress, psychological help seeking or quality of life
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Were published in English;
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Were published after 31st December 1998 and prior to 1st February 2011.
Results
Search results
Study quality
Study | Design (Level of evidence) | Participants | Aim of interview | Study factor | Results |
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Chapple 2004a & b, UK | Home interview (Level III) | Lung cancer patients | Lung cancer patients’ experience of lung cancer including their perceptions, how others reacted to the diagnosis and financial issues | Stigma | Some participants perceived lung cancer as being viewed in the broader society as a self-inflicted disease resulting from smoking and leading to a horrible death. One participant noted that the stigma applied to all lung cancer patients; smokers and non-smokers. As a result of the smoking related stigma it was thought that lung cancer research and screening was neglected. |
N = 45 | The press was criticised for blaming lung cancer patients in particular for their disease. | ||||
NSCLC, SCLC and mesothelioma; All stages. |
Medical and treatment outcomes
| ||||
Recruited through general practices, nurses, oncologists, chest physicians and support groups and through study website. | Smoking related stigma was thought to be a reason for lung cancer symptoms not being taken as seriously as those for other cancers leading to delays in diagnosis. | ||||
Psychosocial outcomes
| |||||
Stigma was perceived to result in social isolation, and deterred support group participation (1 participant) and seeking financial relief (1 participant). | |||||
Conlon 2010, USA | Interview, (Level III) | Oncology social workers | Social workers’ perceptions of the lung cancer experience | Stigma |
Smoking stigma
|
N = 18 | Lung cancer was always associated with smoking and patients often reported stigma, guilt, blame and shame. Smoking stigma was seen as a reason why support, funding and advocacy for lung cancer were lower. | ||||
Recruited from 17 cancer hospitals in 13 states with experience with approximately 25,000 lung cancer patients. | Division between lung cancer patient smokers and non-smokers. | ||||
Poor prognosis stigma
| |||||
Patient reported lung cancer stigmatised as being mostly fatal. | |||||
Psychosocial outcomes
| |||||
Patients reported smoking stigma sometimes resulted in reluctance to tell others that they have lung cancer. | |||||
Psychosocial outcomes
| |||||
Poor prognosis stigma potentially led to difficulties attending support groups. | |||||
Corner 2005 & 2006, UK | Semi-structured interviews with a time-line prompt mostly in home and often with a relative present (Level III) | Patients recently (<3 months) diagnosed with lung cancer | To explore delays in lung cancer diagnosis | Stigma |
Medical and treatment outcomes
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All experienced symptoms for 4 months or more prior to visiting doctor | Factors potentially leading to delay in seeking medical treatment included expectation and fear that smokers would be denied treatment (reported by 1 participant who was a smoker) | ||||
N = 22; 12 men, 10 women | |||||
Median age = 68 years | |||||
15/22 inoperable disease | |||||
1/22 never smoker | |||||
Recruited from 2 hospital outpatient clinics. | |||||
Leydon 2003, UK | Telephone and face-to-face semi-structured interviews (Level IV) | Cancer patients diagnosed < 2 years ago with a focus on those of lower SES | Perceptions of cancer diagnostic process | Lung cancer specific fear |
Medical and treatment outcomes
|
N = 17; 5 men, 12 women | Lung cancer viewed as fatal (by 1 participant). This theme was reported as arising in the context of potential barriers to seeing a doctor | ||||
Included 2 lung cancer patients; a 67 year old male and a 59 year old female. | |||||
Recruited through cancer support community organisations. | |||||
Sharf 2005 USA, Texas | Interview with guiding questions (Level III) | Patients with NSCLC or a suspicious pulmonary mass who refused or did not follow-up for physician-recommended treatment (N = 7) or invasive investigation (N = 2). | Reasons for declining physician-recommended treatment or follow–up options | Nihilism |
Medical and treatment outcomes
|
100% male, 89% white | Reasons reported included the view that lung cancer treatments were futile (5 participants). | ||||
Identified at multidisciplinary pulmonary conferences and review of pathology reports at a university affiliated Veterans Affairs hospital. | |||||
9/31 eligible patients interviewed | |||||
2 with history of depression | |||||
Tod 2008, UK | Semi-structured home interviews with partner or a friend participating at the request of 12 participants (Level III) | Lung cancer patients | Factors influencing delay in reporting symptoms (patient delay) | Stigma |
Medical and treatment outcomes
|
N = 20; 12 men, 8 women. | Nihilism | Factors identified that might result in patient delay in consulting a doctor about their symptoms included the stigma that it was caused by smoking and fear. | |||
18 diagnosed in past 6 months | |||||
3 non smokers; 9 previous smokers. | |||||
Recruited from deprived health district by a respiratory physician and lung cancer nurse specialists. | |||||
Tod 2010 UK | 3 focus groups, (Level III) | Focus group 1; 6 community pharmacists (50% female) | Factors influencing delay in reporting symptoms (patient delay) | Stigma |
Medical and treatment outcomes
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Focus group 2: 6 clinical nurse specialists (100% female) | Factors identified that might result in lung cancer patient delay in consulting a doctor about their symptoms included fear of negative evaluation and expectation of denial of treatment especially for smokers. | ||||
Focus group 3: 2 practice nurses (100% female) | |||||
Recruited an area with high levels of lung cancer and smoking and a history of heavy industry |
Study | Design (Level of evidence) | Participants | Study factors/Patient groups | Outcomes | Comments and quality |
---|---|---|---|---|---|
LoConte 2008: Else-Quest 2009, Wisconsin USA | Cohort | NSCLC, breast or prostate cancer | Lung cancer (N = 96) vs breast cancer | Guilt and shame (SSGS) | Primary endpoint = SSGS |
Mailed patient self report survey (Level IV as only cross-sectional baseline data were relevant) | Stage IV | (N = 30) or prostate cancer | Perceived cancer related stigma | Target sample size lung cancer | |
Fluent and able to complete survey in English | (N = 46) | Perceived stigma | N = 94, breast cancer N = 47, prostate cancer N = 47 to detect anticipated difference of > 0.75 points in mean SSGS scores with 80% power for a 2-sided significance level of 0.05 | ||
Recruited from 3 oncology clinics | Study closed prematurely because of poor accrual among breast cancer patients | ||||
Mean age, years (SD) | |||||
Lung cancer = 65.6 (11) | |||||
Breast cancer = 61.8 (9.8) | |||||
Prostate cancer = 72.9 (9.2) | |||||
200/237 recruited | |||||
172/200 (86%) completed at least 1 questionnaire | |||||
Cross sectional |
Study quality
| ||||
Mailed patient self report survey (Level IV) | Lung cancer patients | Current or former smokers (N = 88) vs never smokers | Guilt and shame | Subject selection0 | |
(n = 96) | (N = 8) | Perceived cancer | Group comparability0 | ||
49% women | Perceived stigma | related stigma | Participation rate0 | ||
Guilt and shame | Anxiety | ||||
Anger | |||||
Depression | |||||
Self esteem | |||||
Cataldo 2011, USA | Cross sectional | Lung cancer all types and stages | Lung cancer stigma | Depression | Outcomes used to validate lung cancer stigma scale |
Patient self report online survey (Level IV) | Convenience sample | Self esteem | |||
Recruited via websites frequented by potential study participants | Social support | ||||
70% female | Social conflict |
Study quality
| |||
21% never smoked | Quality of life | Subject selection0 | |||
Mean age, years (SD) = 55 (13.7) | Group comparabilityNA | ||||
186/200 completed all stigma items | Participation rate0 | ||||
Devitt 2010, Victoria, Australia | Cross sectional | Shame about lung cancer as a potential barrier to participating in a support group | 12% of participants reported attending a face-to-face support group | ||
Patient self report survey (Level IV) | Lung cancer (74% NSCLC, 16% SCLC, 5% mesothelioma, 5% presumed lung cancer) | 53% of participants indicated they would be likely or very likely to attend a support group for lung cancer patients | |||
42% Stage IV | Also surveyed support group facilitators | ||||
Able to complete survey in English | |||||
Consecutive lung cancer patients attending multidisciplinary outpatient clinics at a cancer centre subsequent to initial consultation |
Study quality
| ||||
Excluded those with cognitive impairment or ECOG performance status > 2 | Subject selection0 | ||||
12% current smokers | Group comparabilityNA | ||||
Median age, years = 68 | Participation rate0 | ||||
42% female | |||||
Response rate = 101/172 (59%) | |||||
Lobchuk 2008b, Canada | Cross sectional | Primary caregivers of lung cancer patients (76% NSCLC) | Primary caregiver blame re patient’s efforts to control the disease | Primary caregiver assistance in coping with lung cancer and its symptoms | |
Preliminary sample | 58% diagnosed with advanced disease |
Study quality
| |||
Primary caregiver self report survey (Level IV) | Able to speak, read and write in English and cognitively competent | Subject selection0 | |||
Convenience sample recruited from 5 outpatient cancer clinics | Group comparability0 | ||||
Patients | current (N = 25) vs former (N = 66) vs never (N = 9) smokers | Primary caregiver blame re patient’s efforts to control the disease | Participation rate0 | ||
9% never smokers | |||||
Mean age, years (SD) = 64 (8.0) | |||||
62% female | |||||
Response rate = 100/350 (29%) | |||||
Siminoff 2010, USA, Ohio | Cross sectional | Lung cancer patients with a primary caregiver | Family blames the cancer on the patient for not taking better care of themselves | Patient depression | |
Patient and their primary caregiver semi- structured interview, (Level IV) | Stage III or IV NSCLC | Patient and caregiver perceptions |
Study quality
| ||
Recruited from a comprehensive cancer centre and its community affiliates – identified by their physicians | Subject selection0 | ||||
92% smokers | Group comparability1 | ||||
Mean age, years (SD) = 65 (9.7) | (adjusted for age and sex) | ||||
45% female | Participation rate0 | ||||
Response rate = 76% | |||||
N = 190 patients + caregivers |
Study | Design (Level of evidence) | Health professionals | Study factors/Patient groups | Outcomes | Comments and quality |
---|---|---|---|---|---|
Jennens 2004, Australia | Cross sectional | All Australian general, pulmonary and palliative care physicians, medical and radiation oncologists and thoracic surgeons (N = 1325) who saw at least one patient a year with metastatic lung cancer | Pessimism regarding the use of platinum based chemotherapy for stage IV NSCLC | Referrals for chemotherapy for stage IV NSCLC | Referrals to chemotherapy is included as part of the measure of pessimism |
Mailed self report survey (Level IV) | N = 544 |
Study quality
| |||
Response rate = 51% | Subject selection2 | ||||
Group comparabilityNA | |||||
Participation rate0 | |||||
Schroen 2000, USA | Cross sectional | Members of American College of Chest Physicians self reportedly practising either pulmonary medicine or thoracic surgery and treating adult lung cancer patients | Nihilism – underestimation of survival rate for resected stage I NSCLC | Beliefs re survival benefit for chemotherapy for various stages of NSCLC and radiotherapy for resected disease | Considered gender, treatment volumes, date of medical training completion |
Mailed self report survey (Level IV) | Randomly selected | Thoracic surgeons and pulmonologists see patients early in their diagnosis and refer patients to medical and radiation oncologists | |||
Pulmonologists N = 594 (response rate = 50%) |
Study quality
| ||||
Thoracic surgeons N = 416 (response rate = 52%) | Subject selection0 | ||||
Group comparability0 | |||||
Participation rate0 | |||||
Wassenaar 2007, Wisconsin USA | Cross sectional | All 1132 members of the American college of Physicians- Internal Medicine or the American College of Family Physicians in Wisconsin | Lung (NSCLC) vs breast cancer | Referrals to clinical oncologist | Physicians answering lung cancer questionnaire saw average 4.12 lung cancer patients/year. |
Mailed self report survey (Level IV) | Randomly allocated scenarios with lung or breast cancer patients, smokers or non smokers at stage 1B, M1 and end of life | Beliefs re survival benefits of chemotherapy for various cancer stages | Anticipated response rate at least 30% | ||
N = 672 | Sample size chosen to detect differences of at least 25% in the response patterns between disease groups with 80% power for a two-sided significance level of 5% | ||||
Response rate = 59.4% |
Study quality
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Subject selection1 | |||||
Group comparability2 | |||||
Participation rate0 |
Quality category | Studies meeting criterion, n (%) |
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1. Sample
| |
(a) Clear and/or Justified Sampling frame
| |
2. Clear rationale for sample selection | 5 (71) |
1.Convenience sample (e.g., volunteers) | 2 (29) |
0. Sampling rationale not described and/or clear | 0 |
(b) Adequacy of sample size
| |
2. Rationale for sample size provided and met | 3 (43) |
1. Rationale for sample size provided but not met | 0 |
0. No rationale provided | 4 (57) |
(c) Adequacy of sample description
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2. Sample adequately described | 3 (43) |
1. Sample partially described | 4 (57) |
0. Sample not described | 0 |
2. Qualitative framework (theoretical orientation e.g., feminism, interpretivism, critical theory)
| |
2. Framework provided for study design and methodology and orientation disclosed | 1 (14) |
0. No framework provided | 6 (86) |
3. Interviewer bias addressed
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2.Yes | 2 (29) |
0. No | 5 (71) |
4. Data recording
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2. Objective methods used for data capture (e.g., tape recording, transcription) | 7 (100) |
0. Subjective methods used or methods not described | 0 |
5. Data analysis
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2. Method of analysis described (e.g., thematic analysis, interpretative, phenomenological analysis, content analysis) and detailed | 5 (71) |
1. Either method of analysis described only or detailed only | 2 (29) |
0. Method of analysis not described or detailed | 0 |
6. Reliability and validity
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2. Checks for data credibility are provided (e.g., triangulation, audits and continual recoding, intercoder and intracoder reliability) | 3 (43) |
1.Partial checks for data credibility | 2 (29) |
0. No clear checks provided for reliability and validity of qualitative approach | 2 (29) |
7. Data presentation
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2. Examples of data presented that provide an understanding of data analysis and interpretation (one or two quotes or specific examples) | 7 (100) |
1. Examples provided but do not present a clear interpretation of data | 0 |
0. Very little data presented | 0 |
Quality category | Studies meeting criterion, n (%) |
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1. Subject Selection
| |
2. Representative of population of interest | 1 (12.5) |
1. Selected group | 1 (12.5) |
0. Highly selected or not described | 6 (75.0) |
2. Comparability of groups analysed on demographic characteristics
| |
2. Comparable (or matched) | 1 (12.5) |
1. Not comparable but adjusted analysis used | 1 (12.5) |
0. Not comparable and not adjusted for differences | 3 (37.5) |
Not applicable: no comparisons made | 3 (37.5) |
3. Participation rate
| |
2. High participation rate (>80%) and no important differences between participants and non-participants | 0 |
1. Moderate participation rate (65-80%) and no important difference between participants and non-participants | 0 |
0. Low participation rate (<65%), important differences between participants and non- participants or not described | 8 (100) |
Lung cancer related stigma
Study | Participants | Outcome | Main findings |
---|---|---|---|
Lung (N = 96) vs breast (N = 30) or prostate (N = 46) cancer patients | |||
LoConte 2008: Else-Quest 2009 USA |
Baseline differences between groups
| ||
Stage IV |
Patient
| ||
Lung cancer patients | Guilt and shame (SSGS) | NS^ | |
100% NSCLC | Shame subscale | NS^ | |
Perceived cancer related stigma (5 items) | p < 0.01^ greater for those with lung cancer | ||
Lung (N = 89) vs breast (N = 30) vs prostate (N = 43) cancer patients | |||
LoConte 2008: Else-Quest 2009 USA |
Baseline differences between groups
| ||
Stage IV |
Patient
| ||
Lung cancer patients | Guilt and shame (SSGS) | NS^^ | |
100% NSCLC | Perceived stigma (single item) | NS^^ | |
Smoking history (N = 88) vs Never smoker (N = 8) lung cancer patients | |||
LoConte 2008: Else-Quest 2009 USA |
Differences between groups
| ||
Stage IV NSCLC |
Patient
| ||
Guilt and shame (SSGS) | p = 0.02* greater for those with a smoking history | ||
Perceived cancer related stigma (5 items) | NR | ||
Current smoker (N = 25) vs Former smoker (N = 66) vs Never smoker (N = 9) lung cancer patients | |||
Lobchuk 2008b Canada | 58% diagnosed with |
Patient
|
Differences between groups
|
advanced disease 76% NSCLC | Primary caregiver blame re patient’s efforts to control the disease - single item | p < 0.05^^ greater for current vs never smokers | |
p < 0.05^^ greater for former vs never smokers | |||
Lung vs breast cancer | |||
Wassenaar 2007 USA |
Physician
|
Differences between groups
| |
Different stages | Referrals to clinical oncologist for the scenarios: | ||
after surgery for stage 1B disease | p = 0.86* | ||
hepatic and lung metastases – good performance status | p < 0.001* lower for lung cancer | ||
metastases - poor performance status | p < 0.001* lower for lung cancer | ||
advanced disease – solely for supportive or palliative care | p = 0.009* higher for lung cancer | ||
Reported importance of type of cancer as a factor contributing to decision to refer to oncologist | p = 0.19#
| ||
Belief that chemotherapy could improve survival for: | |||
stage IB resected disease | p = 0.001* lower for lung cancer | ||
metastatic disease – good performance status | p = 0.015* lower for lung cancer |
Study | Participants | Study Factor(s) | Outcome | Main findings |
---|---|---|---|---|
LoConte 2008: Else-Quest 2009, USA | Stage IV NSCLC |
Association between stigma or self blame and outcomes
| ||
Perceived stigma | ||||
(1 item) | Self esteem (RSES) | NS** | ||
Direct effect | p< 0.01# Negative association | |||
Indirect effects via self-blame (SSGS) | ||||
Anxiety (State-Trait Anxiety Inventory) | p< 0.01**Positive association | |||
Direct effect | p< 0.05# Positive association | |||
Indirect effects via self-blame (SSGS) | ||||
Anger (State-Trait Anger Inventory) | p< 0.01** Positive association | |||
Direct effect | p< 0.01# Positive association | |||
Indirect effects via self-blame (SSGS) | ||||
Depression (shortened CES-D) | p< 0.01** Positive association | |||
Direct effect | p< 0.01# Positive association | |||
Indirect effects via self-blame (SSGS) | ||||
Self Blame (SSGS) adjusted for perceived stigma | Self esteem (RSES) | p< 0.01** Negative association | ||
Anxiety (State-Trait Anxiety Inventory) | p< 0.01** Positive association | |||
Anger (State-Trait Anger Inventory) | p< 0.01** Positive association | |||
Depression (shortened CES-D) | p< 0.01** Positive association | |||
Cataldo 2011, USA | All types and stages of lung cancer | |||
Lung cancer stigma scale (Cataldo scale - 43 items) | Depression (CES-D) | p< 0.01* Positive association | ||
Quality of life (Quality of Life Inventory) | p< 0.01* Negative association | |||
Self esteem (RSES) | p< 0.01* Negative association | |||
Social support (Social Support Indices) | ||||
Availability | p< 0.01* Negative association | |||
Validation | p< 0.01* Negative association | |||
Subjective social integration (Social Support Indices) | p< 0.01* Negative association | |||
Social conflict (Social Support Indices) | p< 0.01* Positive association | |||
Lung cancer stigma scale Stigma and shame subscale (19 items) | Depression (CES-D) | p< 0.01* Positive association | ||
Quality of life (Quality of Life Inventory) | p< 0.01* Negative association | |||
Self esteem (RSES) | p< 0.01* Negative association | |||
Social support (Social Support Indices) | ||||
Availability | p< 0.01* Negative association | |||
Validation | p< 0.01* Negative association | |||
Subjective social integration (Social Support Indices) | p< 0.01* Negative association | |||
Social conflict (Social Support Indices) | p< 0.01* Positive association | |||
Devitt 2010, Victoria, Australia | 42% Stage IV 74% NSCLC | Shame about lung cancer | Participation in a support group | 10% of patients reported shame as a potential barrier |
29% of support group facilitators thought patients’ shame was a potential barrier | ||||
Lobchuk 2008b, Canada | Primary caregivers of lung cancer patients |
Correlation between caregiver blame and caregiver assistance
| ||
58% advanced disease | Primary caregiver blame re patient’s efforts to control the disease (single item) | Primary caregiver assistance in coping with lung cancer and its symptoms (single item) | r = 0.044, p = 0.66 | |
76% NSCLC | ||||
Siminoff 2010, USA, Ohio | Stage III or IV NSCLC | Family blames cancer on the patient |
Regression coefficient for blame and depression
| |
Patient agrees | Patient Depression (CES-D) | |||
Familial cohesion | p< 0.051 Positive association | |||
Familial expressiveness | p< 0.052 Positive association | |||
Familial conflict | p< 0.053 Positive association | |||
Caregiver agrees | Patient Depression (CES-D) | |||
Familial cohesion | p< 0.051 Positive association | |||
Familial expressiveness | p< 0.052 Positive association | |||
Familial conflict | p< 0.053 Positive association |
Study | Health professionals | Outcome | Main findings |
---|---|---|---|
Pessimism regarding the use of platinum based chemotherapy for stage IV NSCLC | |||
Jennens 2004 Australia | Physicians, medical and radiation oncologists and thoracic surgeons who saw patients with metastatic lung cancer |
Referrals for chemotherapy for stage IV NSCLC | Does not examine the effect of pessimism on referrals - the outcome of interest, referrals for chemotherapy, is included as part of the measure of pessimism |
Pessimists vs realists vs optimists (underestimation vs realistic estimation vs overestimation of survival rate for resected stage I NSCLC) | |||
Schroen 2000 USA | Pulmonologists and thoracic surgeons treating adult lung cancer patients |
Differences between pessimists, realists and optimists
| |
Believe in survival benefit in NSCLC for chemotherapy: | |||
As adjuvant for resected stage I-IIIA disease | p = 0.07* | ||
In addition to radiotherapy for unresectable locally advanced disease | p < 0.001* lower for pessimists | ||
For stage IV disease | p = 0.31* | ||
Believe in palliative benefit for chemotherapy for stage IV NSCLC | p = 0.19* | ||
Believe in survival benefit for adjuvant radiotherapy in resected stage I-IIIA NSCLC | p = 0.66* |