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Table 4 Description and frequency of psychosocial measures

From: The psychosocial determinants of quality of life in breast cancer survivors: a scoping review

Psychosocial measure Frequency used Primary Author, Year
Social Support
 Medical Outcomes Study (MOS) Social Support Survey-(19 items)- measures perceived availability of support: emotional/informational support, tangible support, affectionate support, and positive social interaction [62] 3 Ashing –Giwa K.T.. 2010 [33], Dura-Ferrandis E, 2016 [28], Goyal N. G, 2018 [23]
 Interpersonal Support Evaluation List (ISEL)- 40 items- evaluates the perceived availability of four dimensions of social support consisting of belonging, appraisal, tangible and self-esteem support. Belonging support is the availability of people with whom one can do things. Appraisal support is the availability to talk to or behaviours of a supporting person, including empathy, caring, love and trust. Tangible support is instrumental aid and comprises providing support in a physical way that assists an individual in meeting their role responsibilities. Self-esteem support is the availability of a positive comparison when comparing oneself with others [63] 3 Carver C.S. 2006 [13], Huang C.Y. 2013 [36] Lewis, J., 2001 [37]
 Social Support Questionnaire (SSQ-6) -6 questions asking about the affective aspects of social support. Each question has two parts, which are the number of support persons (SSQ6-N) and the satisfaction with social support (SSQ6-S) [64]. 1 Cheng H, 2013 [34]
 Social Networks Index - assesses participation in 12 types of social relationships. These include relationships with a spouse, parents, parents-in-law, children, other close family members, close neighbours, friends, workmates, schoolmates, fellow volunteers, members of groups without religious affiliation, and religious groups. One point is assigned for each type of relationship (possible score of 12) for which respondents indicate that they speak (in person or on the phone) to persons in that relationship at least once every 2 weeks [65]. 1 DiSipio T, 2009 [35]
 Emotional support from health care providers, family members and friends/co-workers (rated low vs. high). Satisfaction with partner scale was combined with marital status as follows: (1) respondent did not report a partner; (2) respondent is slightly satisfied or very satisfied with partner relationship, or (3) respondent is neutral, slightly, or very unsatisfied with their partner. 1 Janz N.K., 2014 [26]
 Social Support Questionnaire (SSQ-8) is a self-administered measure of social support from five sources: spouse, family member, friend, nurse, and physician (40 items in all) [66]. 1 Sammarco, A., 2008 [32]
 Family APGAR- family functioning- a 5-item scale assesses participants’ satisfaction with their family’s ability to communicate, assist one another, and respond to change. Each item (e.g., “I am satisfied when I can turn to my family for help when something is troubling me”) is rated on a scale from 1 (never) to 5 (always) [67]. 1 Northouse, L.L (1999) [38]
 Norbeck Social Support Questionnaire (NSSQ) is a self-administered 9-item instrument that measures the multiple dimensions of social support including functional components of affirmation, aid, and affection; social network properties of frequency of contact, number in network, and duration of relationships; and recent losses of supportive relationships [68]. 1 Pedro L.W. (2001) [39]
 Supportive Care Needs Survey- Short Form- is a standardised instrument for measuring cancer patients’ perceived needs across a range of domains. A total number of 34-items are divided into five domains: physical/daily living (5 items), psychological (10 items), sexuality (3 items), patient care and support (5 items) and health system and information needs (10 items) [69].
 Supportive Care Needs Survey – Health system and information needs domain only [69].
2 Edib Z (2016) [40]
DiSipio T., 2009 [35]
 Cancer Rehabilitation Evaluation System (CARES)- a multidimensional self-administered instrument containing multiple problem areas. Administered the marital and sexual scales and the body image subscale. The marital scale includes five subscales (communication with partner, affection with partner, interaction with partner, neglect by partner and overprotection). The sexual scale included two subscales: sexual interest and sexual dysfunction [70]. 1 Avis N.E. (2005) [41]
Depression
 Centre for Epidemiological Studies-Depression (CES-D) is a screening tool for depressive symptoms and includes 20-item to investigate perceived mood and level of functioning within the past 7 days. Scores of 16 or higher are considered indicative of depression [71]. 2 Begovic-Juhant, A., 2012 [42], DeShields, T., 2006 [24]
 Hospital Anxiety and Depression Scale (HADS) is a validated screening instrument for anxiety and depression in somatically ill patients. A score of 0 to 7 is categorized as normal, a score of 8 to 10 is considered to indicate a possible anxiety or depressive disorder, and a score of 11 or above is considered to indicate a probable anxiety or depressive disorder [72]. 2 Cheng A.S.K., 2016 [43], Simone, S.M. H, 2013 [73]
 Becks Depression Inventory- a 21-item, self-report rating inventory that measures characteristic attitudes and symptoms of depression [74]. 2 Goyal N. G, 2018 [23], Kim, S.H.., 2008 [44]
 Depression history -no history, history of depression without current symptoms, history of depression with current symptoms 1 Janz N.K., 2014 [26]
Anxiety
 Hospital Anxiety and Depression Scale (HADS) is a validated screening instrument for anxiety and depression in somatically ill patients. A score of 0 to 7 is categorized as normal, a score of 8 to 10 is considered to indicate a possible anxiety or depressive disorder, and a score of 11 or above is considered to indicate a probable anxiety or depressive disorder [72]. 3 Akechi, T., 2015 [45], Cheng A.S.K., 2016 [43], Simone, S.M. H, 2013 [73]
Positive and negative affect
 Positive and Negative Affect Scale (PANAS) is a 20-item tool that contains two 10-item scales, one measuring positive affect and the other negative affect. Positive affect items reflect the extent to which an individual feels enthusiastic, active, and alert. Negative affect items reflect subjective feelings of distress, including anger, contempt, guilt, fear, and nervousness [75]. 1 Kessler, T. A. 2002 [46]
Coping
 Brief COPE- 9 of the original 14 subscales were grouped. Active coping, instrumental support, emotional support, acceptance, and positive reframing were combined to assess Engagement Coping. The behavioral disengagement and denial subscales were combined as Disengagement Coping. Venting and self-distraction were considered as separate subscales [76]. 1 Dura-Ferrandis E, 2016 [28]
 Brief COPE- The 28-item scale was used to measure 14 types of coping strategies. Two domains were formed from seven strategies: active coping (active coping, use of emotional support, use of instrumental support, and positive reframing) and passive coping (self-blame, denial, and behavioral disengagement) [76]. 2 Goyal N. G, 2018 [23], Paek, M., 2016 [25]
 Family Crisis Oriented Personal Evaluation Scale (F-COPES)- assesses a family’s problem-solving strategies in response to family problems/difficulties and includes 3 external (use of outside resources) and 2 internal family coping strategies (utilize the family’s internal strengths/resources). This study focused on the following coping: external (6-item acquiring social support from friends/relatives, 3-item acquiring social support from neighbors, and 4-item seeking spiritual support) and internal (8-item reframing) family coping strategies [77]. 1 Paek M, 2016 [47]
 Ways of Coping-Cancer Version - participants were asked to indicate how often they had used each of the following strategies in the last 6 months in attempting to cope with the most stressful part of their breast cancer; seeking and using social support, keeping feelings to self, using positive cognitive restructuring, using wishful thinking, making changes, spirituality and detachment. Three items assessed feelings of preparedness for coping with breast cancer, how well prepared patients were for the impact of cancer on their relationships, how they might feel about their appearance after surgery, and availability of counseling or support groups [78]. 1 Avis N.E. (2005) [41]
Confidence and self-efficacy
 Question- confidence about remaining cancer free- ‘To
 what extent do you believe that you will remain free of cancer in the future?’ answered on a nine-point scale, with 9 = absolutely sure I won’t get cancer again, 5 = I don’t know and 1 = not at all confident, I expect to get cancer again
1 Carver C.S. et al. 2006 [13]
 The Self Rated Abilities for Health Practices Scale (SRAHP) is a 28-item, 5-point scale to measure self-perceived ability to implement health-promoting behaviors. SRAHP contains four subscales: Exercise, Nutrition, Responsible Health Practice, and Psychological Well Being. Each subscale has seven items. Respondents are asked to rate the extent to which they are able to perform health practices related to these four domains [79]. 1 DiSipio T et al., 2009 [35]
 Rosenberg Self-Esteem Scale- a self-administered, 10-item scale that measures the self-acceptance aspect of self-esteem or the overall sense of being capable, worthwhile, and competent [80]. 1 Pedro L.W. (2001) [39]
 Rosenbaum Self-Control Schedule- used as a measure of learned resourcefulness (36 items). For each of the 36 items participants indicate the degree to which it describes their behavior on a 6-point scale ranging from extremely descriptive (+ 3) to extremely non-descriptive (− 3) [81]. 1 Pedro L.W. (2001) [39]
Spirituality
 Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being (FACIT-SP-12). This 12-item questionnaire consists of two subscales, one measuring a sense of meaning and peace and the other assessing the role of faith in illness [82]. 1 Goyal N. G, 2018 [23]
 Religious Coping (RCOPE) - spiritual struggle was measured using the 7-item Negative Coping subscale of RCOPE. Examples of items on the Negative Coping subscale include “I wondered what I did for God to punish me” and “I wondered whether God had abandoned me”. Measured on a 4-point Likert-type scale ranging from 0 (not at all) to 3 (a great deal), the participants were asked to indicate the degree to which they used each strategy [83]. 1 Manning-Walsh J, 2005 [48]
 System of Beliefs Inventory– (SBI-15R) - which measures both religious and spiritual aspects of belief systems in coping with a life-threatening illness. The SBI-15R encompasses both constructs by assessing beliefs and practices of faith systems (10 items, Subscale I) and social support from the religious and/or spiritual community (5 items, Subscale II), and applies equally to atheists, agnostics, those with no religious affiliation, and those with a moderate or strong religious or spiritual orientation [84].
 The SBI-15R was modified to include 4 items from the Beliefs and Practices subscale (e.g. “Religion is important in my day-to-day life”, “Prayer has helped me cope during times of serious illness”) and four items from the Social Support subscale (e.g., “I enjoy attending religious functions held by my religious or spiritual group”, “I know someone in my religious or spiritual community that I can turn to”). Items from each subscale were averaged for all participants, with a range of values from 1 (strongly disagree) to 5 (strongly agree) [84].
2 Wildes, K.A. 2009 [49]
Janz N.K., 2014 [26]
Optimism
 Life Orientation Test- comprised of 8 items, plus 4 filler items that are not calculated in the total score. Each item (e.g., “I always look on the bright side of things”), is rated on scale from 0 (strongly disagree) to 4 (strongly agree). Individual items are summed (excluding the filler items) with higher scores indicating more dispositional optimism [85]. 4 Carver C.S. et al. 2006 [13], Dura-Ferrandis E, 2016 [28], Goyal N. G, 2018 [23], Northouse, L.L (1999) [38]
 The Minnesota Multiphasic Personality Inventory (MMPI) – The original MMPI is a 566-item self-report inventory that utilizes a true/false response format. The MMPI yields information about personality factors related to psychiatric syndromes. The optimism-pessimism (PSM) scale was developed using 298 MMPI items [86]. 1 Petersen L.R. (2008) [50]
Future perspectives and appraisal
 Mishel Uncertainty in Illness Scale – Community Form (MUISC) is a 23-item, 5-point (strongly disagree to strongly agree), Likert-type scale, self-administered measure of the uncertainty perceived in illness [87]. 2 Sammarco, A., 2008 [32], Farren, A. T, 2010 [51]
 Appraisal of illness scale- consists of 27 scored items (e.g., “this situation threatens to overwhelm me”) and 5 unscored filler items, with a 5-point Likert-type response format with choices ranging from 1 (very false) to 5 (very true) [88]. 1 Northouse, L.L (1999) [38]
 Power as Knowing Participation in Change Tool (PKPCT) is a 52 item semantic differential scale designed to measure an individual’s capacity to participate knowingly in change on four subscales (awareness, choices, freedom to act intentionally, and involvement in creating change) [89]. 1 Farren, A. T, 2010 [51]
 Self-Transcendence Scale (STS) measures the capacity for self-transcendence. It is a unidimensional, 15-item, 4-point Likert scale. The scale ranges from not at all to very much [90]. 1 Farren, A. T, 2010 [51]
 Received enough information from their doctors or the staff about risk of breast cancer recurrence (yes/no). (Time 1)
 Perceived likelihood of breast cancer recurrence (“not at all likely” to “very likely to recur”). (Time 2)
 Worry about recurrence-concern the cancer would recur in the same breast, the other breast, or to another part of the body. (Change from Time 1 to Time 2 scores
 Decision regret -categorized as a lot of decision regret versus none or some decision regret [91].
1 Janz N.K., 2014 [26]
 Fear of Progression Questionnaire-Short Form- (FoP-Q-SF) consists of 12 items pertaining to four scales (affective reactions, partnership/family, occupation, and loss of autonomy), answered on a Likert scale (frequency of experience of fear/worry: 1 = never to 5 = very often) [92]. 1 Koch, L 2014 [29]
 Concerns of Recurrence Scale (CARS) assesses the extent and the nature of women’s concerns about breast cancer recurrence. Two components; Overall fear index includes 4 questions on frequency, potential for upset, consistency, and intensity of fears. Scores are given on a six-point Likert scale that ranges from 1 (not at all) to 6 (continuously). The nature of women’s fears about recurrence includes 26 items subdivided into four domains: health worries, womanhood worries, role worries, and death worries. Health worries (11 items) measures concern about future treatment (e.g., chemotherapy, radiation, and surgery), emotional upset, physical health, carrying out planned activities, and loss of breast(s). Womanhood worries (7 items) measure femininity, sexuality, womanhood, body image, romantic relationships, identity, and spirituality or faith. Role worries (6 items) measure roles and responsibilities at work and at home, relationships with friends and family, physical ability to complete daily activities, financial problems, and self-confidence. Death worries (2 items) measure the possibility that a recurrence of breast cancer could lead to death. Scores range from 0 (not at all), 1 (a little), 2 (moderately), 3 (a lot), to 4 (extremely), to indicate the extent to which they worry about each item [93]. 1 Taylor, T.R., 2012 [30]
 Perceptions of life- a 12-item scale to measure perceptions of life after cancer (developed by the authors). Example items include “Surviving breast cancer has changed my outlook on life,”, “I get less worried about trivial things,” and “I feel more vulnerable now, as if the world is a more dangerous place.” Respondents indicate the extent to which they believe their outlook has changed on a 5-point scale, ranging from 0 (not at all) to 4 (very much). The first factor includes six items assessing changes in perspectives and priorities as a measure of positive meaning. The second factor includes five items assessing fears about recurrence and about one’s body, and measures vulnerability [94]. 1 Ganz P.A. (2003) [52]
Impact of Events
 Impact of Events Survey (IES)- The IES is a 15 item self-report measure of intrusive thoughts and avoidance associated with a stressor (breast cancer). In this study the Intrusion subscale of the IES is considered a measure of processing. Participants rated how true each statement has been for them in the past 3 weeks, using the following scale: 0 = Not at all, 1 = Rarely,3 = Sometimes, and 5 = Often. All statements were anchored to the participant’s cancer and its treatment, such as “Thought about it when I didn’t mean to” and “I had dreams about it.” [95] 1 Lewis J., 2001 [37]
 Illness Intrusiveness Rating Scale- measures the impact of cancer on multiple life areas (13-items). Using a Likert scale ranging from one (not very much) to seven (very much), participants rate the degree of interference caused by their illness or its treatment with 13 aspects of their lives. These domains are: health, diet, work, active and passive recreation, financial situation, relationship with spouse, sex life, family and other social relations, self-expression/self-improvement, religious expression and community/civic involvement [96]. 1 Goyal N. G, 2018 [23]
 Impact of Cancer scale–is a self-report instrument that is designed to capture how long-term survivors interpret the overall positive and negative impacts of having cancer in their lives. Item responses are in a five-point Likert scale format where respondents are asked to give their overall agreement from 1 (strongly disagree) to 5 (strongly agree). Mean scores are compiled for each domain and then aggregated into the two meta-domains: the positive impact of cancer (PIC) and the negative impact of cancer (NIC) [97]. 1 Bouskill K. (2016) [53]
Stress
 Post-traumatic Stress Disorder Checklist Civilian Version (PCL-C) -assesses post-traumatic stress symptoms. The PCL-C is a 17-item self-report checklist of PTSD symptoms based closely on the DSM-IV criteria. Respondents rate each item from 1 (“not at all”) to 5 (“extremely”) to indicate the degree to which they have been bothered by that particular symptom over the past month [98]. 1 Morrill, E.F., 2008 [54]
 Omega Screening Questionnaire (OSQ) - is comprised of four parts: (a) demographic and background information, (b) health history, (c) inventory of current concerns, and (d) symptoms scale. The demographic section of the OSQ includes a number of questions about the respondent’s age, education, income, and so forth. The Inventory of Current Concerns is a 40-item scale that asks participants to rate the extent to which they have experienced a list of concerns about issues such as finances, children and work in the past month. Participants rate each item according to whether the statement is not true (0), somewhat true (1), or true (2) for them. The Symptoms Scale asks participants to rate the extent to which they have experienced 13 symptoms (e.g., fatigue, breathing problems, pain). Response options are 0 (no trouble), 1 (some), and 2 (a lot) [99]. 1 Northouse, L.L (1999) [38]
 Life Stress Scale – Life burden- which assesses the level of stress associated with various aspects of daily living. Scale consists of family (6-items), functional (4-items), and neighborhood stresses (6-items), Items are rated from 1 to 5, with a higher score indicating less life burden/ stress, and calculated into a mean score [100]. 1 Ashing –Giwa K.T.. 2010 [33]
 Amount of stress (very little, some, a moderate amount, a lot) Perceived handling of stress (not well at all, not well, fairly well, very well) 1 DiSipio T et al., 2009 [35]
 FACT-B Additional Concerns subscale.
 Negative self-image was measured using two items (e.g. “I feel sexually attractive” and “I am able to feel like a woman”) [21]
1 Paek M, 2016 [47]
 Urban Life Stress Scale assesses the level of life-related stress for the past 3-month [101]. In this study, a three-factor structure was selected and named as “functional stress” (e.g., finances, job situation; 3-item), “stressful life-events” (e.g., illness of someone close; 2-item), and “role stress” (e.g., parenting; 3-item). 1 Paek M, 2016 [47]
 The Family Communication Scale of the Family Adaptability and Cohesion Evaluation (FACES-IV) [102] and the Family Avoidance of Communication about Cancer (FACC) Scales [103] were used to assess both general and cancer-specific family communication problems. A composite score was created by averaging the z scores of both measures, with greater scores representing higher communication strain. 1 Paek M, 2016 [47]
Posttraumatic Growth
 Posttraumatic Growth Inventory-an instrument for assessing positive outcomes reported by persons who have experienced traumatic events. This 21-item scale includes factors of New Possibilities, Relating to Others, Personal Strength, Spiritual Change, and Appreciation of Life [104] 2 Morrill, E.F., 2008 [54], Bellizzi K.M. (2009) [27]
Cognitive Symptoms
 Cognitive Symptoms Checklist-Work-21 items are used to assess work-related cognitive problems. The original English version consists of three subscales, including working memory, executive functioning, and attention. The Chinese version used by this current study applied a two-factor instead of three-factor structure that combined items measuring task completion and executive function [105]. 1 Cheng A.S.K., 2016 [43]
Work Limitations   
 Work Limitation Questionnaire (WLQ); measures the degree of work limitation, which is inversely related to work productivity. The 25-item WLQ consists of four subscales: time demands, physical demands, mental interpersonal demands, and output demands; and users rate their ability or level of difficulty in fulfilling the job demands on a scale ranging from 1 to 5 [106]. 1 Cheng A.S.K., 2016 [43]
Healthcare System
 Health care system- patient-doctor relationship (6 items), comfort in health care system (3 items) and diagnostic care delay (1 item). Patient–doctor relationship was assessed from the Interpersonal Aspects of Care subscale of the Adherence Determinants Questionnaire. This measure focuses on interpersonal aspects of care, communication, and rapport on a scale from 1 (strongly disagree) to 5 (strongly agree). (113) Comfort in health care system included use of regular medical check-ups, comfort using the health care system, and comfort in asking questions. Each score was standardized ranging from 0 to 100 and averaged to obtain an overall score. Diagnostic care delay was assessed by asking respondents how long (number of days) they waited to obtain medical care from the time they first noticed something was wrong. It was calculated by the time interval (days) between the first symptom and medical diagnosis 1 Ashing –Giwa K.T.. 2010 [33]