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Clinical guidance for responding to suffering in adults with cancer

Appendix 1 - Measures of suffering and its various analogues

Note – Abbreviations of measurement scales are listed at the end of this section and in the Glossary.

For a full list of measures of suffering and its various analogues, see: Conceptualisation, assessment and interventions to alleviate suffering in the cancer context: a systematic literature review.

Measures of Suffering

Pictorial Representation of Illness and Self Measure (PRISM), Büchi et al, 200299

The PRISM is a novel method of measuring patient suffering. In this task, the patient is asked to imagine that an A4 board represents their life and that a fixed yellow disk in the bottom right hand corner represents their ‘self’. They are asked to place another disk on the board to represent the current importance of their illness in their life. The distance between these two disks provides a Self Illness Separation (SIS) score.100 The revised PRIMS-R2 provides three sizes of disk to indicate perceived severity of illness;101 both task take 4–8 minutes.100 Although face-to-face administration may be preferable,101 the PRISM and its variants have been administered via mail.101, 102

The PRISM was validated in a sample of patients with a variety of chronic physical illnesses (n=700) showing strong test-retest reliability (r = 0.95), inter-rater reliability (r = 0.79) and convergence with other measures including SF-36 (physical r=0.35, metal r=0.20), HADS Depression (r=-0.31) and SOC (r=0.23).99 Qualitative data showed that patients had a consistent understanding of the task and aligned with the conceptualisation of suffering found in the literature with low scores associated with intrusiveness, lack of control and interference. PRISM-R@ was validated in a in a large population based sample of patients with various cancers (n=1299) showing convergence with the SF-36 (physical r=0.17, metal r=0.19 and the Quality of life- Cancer survivors questionnaire (r=0.26).101

The advantages of this measure include its brevity, simplicity, and ease of use.100 In addition, by not specifying items and domains it allows for a subjective assessment of suffering due to illness regardless of how patients individually define this.101, 102

Other available measures of suffering were Mini-Suffering State Examination (MSSE).103

Measuresof Hopelessness and demoralisation

Hopelessness Assessment in Illness Questionnaire (HAI), Rosenfeld et al, 2011104

Hopelessness Assessment in Illness (HAI) Questionnaire was developed specifically for terminally ill cancer patients in a palliative care setting. To avoid results being confounded by prognosis of the patient, this scale was designed to measure hopelessness relatively distinct from prognostic awareness (PA) and psychometric analysis shows a promising ability to do so. The scale can be self-administered or read aloud to the patient. HAI uses anchored hierarchical statements rather than a question-answer response format, with patients choosing which of three statements most applies to them, for example ‘I don’t feel discouraged about my future’, ‘I sometimes feel discouraged about my future’ or ‘I often feel discouraged about my future’. The eight items explore four aspects of hopelessness; affective elements of despair, will to live, sense of futility and cognitive rigidity.

The items for the scale were developed through a three-stage process: 1) qualitative analysis of interviews were conducted with palliative care experts and patients with advanced cancer to determine the aspects of hopelessness to be included 2) classical test theory and item response analysis in order to refine the initial 20 item scale (n=314) and 3) validation in a separate sample of cancer patients (n=228).104 The scale showed concurrent validity with other scales of helplessness BHS (r=0.78) and BHS-7 (r=0.70) and with a clinical rating of hopelessness (CRH) (r=0.74) (based on a Wilson et al’s 2004 brief structured interview). These measures showed lower correlations with measures of prognosis and illness severity, suggesting the HAI was successful in its goal of reducing the confounding impact of prognosis on hopelessness. HAI also showed significant correlations with depression and psychological distress measures (HADS r=0.65 to 0.61), FACIT Spiritual Well-Being scale (r=-0.64, SAHD r=0.60). Importantly, after controlling for other predictors (depression, social support and prognostic awareness) HAI accounted for more of the variance in SAHD than other measures of hopelessness (HAI=13%, BHS=8%, CRH=5%) and more variance in the suicidal ideation than the BHS but not the CRH (HAI=16%, BHS=4%, CRH=20%).

The major strength of the HAI is its strong content validity due to the systematic development of the items. The brevity (8 items) is also an important strength when considering use in a palliative care population and while anchored statements increase the length of the instrument, subjective reports from the researchers indicate that this style of statement increases the ease of comprehension for the terminally ill patient. Considering its brevity, HAI shows strong internal consistency (a=0.87) and substantially greater ability to predict outcome variables than other measures of hopelessness. HAI has the potential for a brief screening tool in the clinical setting although further research is required to determine how best this may be implemented.

Demoralisation Scale, Kissane et al, 2004105

The Demoralisation Scale was developed specifically for use in cancer patients and consists of 24 brief items that can be self-administered. A brief introduction prompts patients to indicate how frequently each item applies to them over the last two weeks using a 5-point response scale (never, seldom, sometimes, often, all the time). The advantage of the Demoralisation Scale is its comprehensiveness, with 24 items and five distinct domains determined through factor analysis, allowing for a detailed examination of the patient. Example items include ‘my role in life has been lost’ loss of meaning, ‘I tend to feel hurt easily’ and ‘I feel guilty’ (dysphonia, explore non-specific emotions of distress and regret), ‘I feel quite isolated and alone’ (disheartenment), ‘I no longer feel emotionally in control’ (hopelessness) and ‘I am a worthwhile person’ (sense of failure, reversed).

The Demoralisation Scale was primarily developed based on the authors’ clinical experience and knowledge of the literature and involved 15 cancer patients in the review process, asking them to comment particularly on the comprehensibility and acceptability of items. Items were revised until the authors reached a consensus on items that represented the construct (face validity). The original validation study took place in a clinical setting with advanced cancer patients (n=100) recruited from pain and palliative care or psycho-oncology clinics in Australia.105 The scale shows strong psychometric properties with high internal reliability in each factor (a=0.71 to 0.89) and concurrent validity with a number of other measures including HOPES (r=-0.65), McGill QOL (r=-0.76), BDI (r=0.76, PHQ (r=0.79), BHS (r=0.67) and SAHD (r=0.577).105 Similar results were found in a subsequent validation study conducted in Ireland (n=100).106 While the original study Kissane et al (2004)105 suggested that demoralisation was distinct from depression, Mullane et al (2009)106 found the interpretation of the data to be inadequate finding convergence between the two constructs in their sample and upon reanalysis of the Kissane et al (2004)105 data.

Other available measures of hopelessness and demoralisation: Beck Hopelessness Scale (BHS);107 Cancer Care Monitor (CCM) – Despair Subscale;108 Demoralisation Scale;109 Single-item screening tool for hopelessness (Structured Interview for Symptoms and Concerns, SISC;110 Subjective Incompetence Scale (SIS).111

Measures of Hope

Herth Hope Index (HHI), 1992112

The Herth Hope Index (HHI) is an abbreviated short version of the 30-item Herth Hope Scale.113 HHI is designed specifically for use in a clinical setting with specific attention given to designing simple items and items relating to adults experiencing alterations in health status. This self-report measure consists of 12 items and uses a four-point Likert scale, ‘strongly disagree (1)’ to ‘strongly agree (4)’. The tool’s three subscales were determined through factor analysis and correspond with Dufault and Martocchio’s (1985) model of hope. The temporality and future subscale comprises items that focus on the positive perception of the self and others and the experience of time on hope, such as ‘I believe that each day has potential’. The positive readiness and expectancy subscale includes items to measure feelings of expectancy and action orientation to affect outcomes such as, ‘I have a sense of direction’. Interconnectedness, contains items that measure the mutuality of hopes and the life situations that surround, influence and are a part of a person’s hope such as, ‘I am able to give and receive care/love’.

The content and face validity was assessed by two panels, consisting of research experts, clinicians and consumers and was pilot tested to insure the usability of the tool. The HHI has been validated in both non-cancer112 and cancer populations114 with preliminary results supportive of the scale’s reliability and validity. The scale shows good internal consistency, both for the entire sample (α = 0.97) and each domains (α = 0.78 - 0.86).112 Concurrent validity has been shown with the original HHS (r=0.91), EWS r=0.84) and the NHS (r=0.81).112 Divergent validity was shown with depression assessed by the BHS. These findings suggest that this 12-item scale is as powerful as the Herth Hope Scale, the 30-item version it was based on.113 Further, a recent review suggests that HHI has been used in a number of studies in the cancer context to date.115

Other available measures of hope include Adult Dispositional Hope Scale (ADHS);116 Herth Hope Scale (HHS);113 Hope Differential (HD);117 Hope Differential-Short (HDS);118 Miller Hope Scale (MHS);119 Nowotny Hope Scale (NHS).120

Measures of Spiritual wellbeing

Functional Assessment of Chronic Illness Therapy - Spiritual Wellbeing (FACIT-Sp), Peterman et al, 2002121

The Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing Scale (FACIT-Sp) comprises 12 self-report items with two subscales. The 8-item Meaning/Peace subscale assesses a sense of meaning, peace, and purpose in life with items including ‘My life has been productive and ‘I am able to reach down deep into myself for comfort’. The 4-item Faith subscale measures several aspects of the relationship between illness and one’s faith and spiritual beliefs with items including ‘I find strength in my faith or spiritual beliefs and ‘I know that whatever happens with my illness, things will be okay’. The scale is can be completed as a self-report measure, with a five-point Likert scale of 0 ‘not at all’ to 4 ‘very much’ reflecting the patient’s experiences in the seven days prior to the interview.

The scale was developed in a comprehensive process involving interviews with cancer patients, psychotherapists, and religious experts.121 The scale and its subscales show adequate internal consistency (a=0.81 to 0.88). None of the correlations between the Meaning/Peace subscale and other measures of spirituality and religion assessed in one validation study met the criteria established by the authors of that study for a significant degree of shared variability.121 They suggest that this scale measures a concept distinct from those assessed by other measures (i.e., the sense of meaning and purpose provided by spirituality, as well as a sense of connection to something bigger than one’s self that is associated with feelings of harmony and peace). However, they base this conclusion on the face validity of the scale, and suggest that further research into the construct validity of the scale is required. It has been argued by others that the Meaning/Peace subscale represents existential wellbeing, while the faith subscale represents religious wellbeing, a construct more closely related to individual religiosity.122 Confirmatory factor analysis has subsequently been used to support a hypothesised three-factor model for the FACIT-Sp, comprising cognitive (i.e., meaning) and affective (i.e., peace) aspects of spirituality as well as faith.123, 124 Responsiveness to change has also been found in a number of studies.15 16 17 18

A major advantage of FACIT-Sp is that it was developed and validated in a large sample size with a large proportion of cancer patients (1,167 patients, 83% with cancer), consists of only 12 items, is used frequently in the context of cancer, and has substantive data available about its psychometric properties. FACIT-Sp is also a part of the large FACIT measurement suite, which has well-published and rigorous standards of measurement development.

Other available measures of hope include Are you at peace? Single item;125 JAREL Spiritual Wellbeing Scale;126 Spiritual Wellbeing LASA item127, 128 Peace, Equanimity and Acceptance in the Cancer Experience (PEACE);129 Self Transcendence Scale (STS),130, 131 Spirit 8;132 Spiritual Health Inventory (SHI) Patient form, Nurse form;133 Spiritual Perspective Scale (SPS);134 Spirituality Transcendence Measure (STM);135 Spiritual Wellbeing Scale (SWBS).136, 137

Measures of Meaning

The Life Attitude Profile - Revised (LAP-R), Reker, 1992138 [as cited in139 and140]

The Life Attitude Profile – Revised (LAP-R) is a self-report multi-dimensional measure of meaning that assesses both meaning and purpose in life, along with the motivation to find meaning and purpose in life. The measure aims to assess meaning in life independent of personal values, and is based on the conceptualisation that meaning in life is a commitment to one’s goals and fulfilment. The measure consists of 48 questions using a seven-point Likert scale from ‘strongly agree’ to ‘strongly disagree’ and takes about 15 minutes to complete. Six subscales are included in the measure: purpose, coherence, choice/responsibleness, death acceptance, existential vacuum and goal seeking. The measure also allows two composite scores: Personal Meaning Index and Existential Transcendence.138 Example questions include:

  • My past achievements have given my life meaning and purpose (purpose)
  • I have a framework that allows me to understand or make sense of my life (coherence)
  • I determine what happens in my life (choice/responsibleness)
  • Since death is a natural aspect of life, there is no sense worrying about it (death acceptance)
  • I feel the lack of and a need to find a real meaning and purpose in my life (existential vacuum), and
  • I am eager to get more out of life than I have so far (goal seeking)

The LAP-R a revised version of the 56 item The Life Attitude Profile141 was originally validated in a sample of university students. The scale shows good internal consistency (α = .77 to .91) and test-retest reliability (4-6 weeks r = .77 to .90).

One strength of this measure is the availability of normative data from non-clinical samples.139 The Personal Meaning Index has been used in the cancer context142, 143 and in a number of languages.144-146 It has sound psychometric properties, and in a recent review of measures it was considered the measure of choice for researchers seeking to explore the link between global meaning and other variables in the context of cancer.139

Functional Assessment of Chronic Illness Therapy - Spiritual Well Being Scale (FACIT-Sp): Meaning/Peace subscale, Peterman et al, 2002121

FACIT-Sp Meaning/Peace subscale consists of eight items assessing the sense of meaning, peace and purpose in life. The scale can be completed as a self-report measure, with a five-point Likert scale of 0 ‘not at all’ to 4 ‘very much’ to reflect the experiences of the patient in the seven days prior to the interview.

The focus of the measure is on global, rather than specific, meaning, with cancer not specifically linked to the concepts of any of the included items.139 The advantage of this measure is that it is part of the large FACIT measurement suite, which has well-published and rigorous standards of measurement development.

Other available measures of meaning include Chinese Cancer Coherence Scale (CCCS);79 Constructed Meaning Scale;147 Illness Cognition Questionnaire (ICQ);148 Internal Coherence Scale (ICS);149 Life Attitude Profile (LAP) (228); Life Evaluation Questionnaire (LEQ);150 Meaning in Life questions151 Meaning in Life Questionnaire (MLQ) (231); Meaning in Life Scale (MiLS);152 Meaning in Suffering Test (MIST);153 Perceived Meanings of Cancer Pain Inventory (PMCPI);154 Personal Meaning Profile(155 cited in156); Positive Meaning and Vulnerability Scale;157 Purpose in Life Test (Lee and Pilkington);158 Purposelessness Boredom and Understimulation scale (PUB)159 ; Schedule for Meaning in Life Evaluation (SMiLE);160 Sense of Coherence Scale (Orientation to Life Questionnaire);161 Sources of Meaning Profile (SOMP) and Sources of Meaning Profile – Revised (SOMP-R) (162 cited in139 and163); World Assumptions Scale.164

Measures of Multi-dimensional measures of quality of life including a spiritual/existential dimension

McGill Quality of Life Questionnaire (MQOL), Cohen et al, 1996,165 Cohen et al, 1997166

The McGill Quality of Life (MQOL) questionnaire167was developed specifically to assess multiple quality of life domains in patients facing life-threatening illness. The measure is brief and a low burden on the patient, with only 17 items asking patients to recall their feelings in the past two days. The questions cover four subscales: physical (seven items), psychological (three items), outlook (five items), existential (three items), as well as a question on global QOL.

The first six items, which form the physical subscale, ask the patient to list the three symptoms that have caused them the most trouble in the last two days, and then to rate how much of a problem these symptoms were for them on a seven- point scale (1 = no problem and 7 = tremendous problem). All other questions consist of a single question that is answered on a seven-point numerical scale between two opposing descriptors, for example:

1. My most troublesome symptom is: ___________________ (physical)

1 2 3 4 5 6 7
no problem tremendous problem

4. How much of the time do you feel sad? (psychological)

1 2 3 4 5 6 7
never always

7. In achieving life goals I have: (existential)

1 2 3 4 5 6 7
Made no progress whatsoever progressed to complete fulfilment

The scale was originally validated in a sample of 247 oncology day centre patients165 and subsequently in a sample of patients with advanced cancer treated in a palliative care service, at home in an inpatient unit (n=95). Good internal consistency was found for both the total scale (a = 0.83 to 0.89)165, 166 and subscales scores (a = 0.70 to 0.77).165, 166 Convergent and divergent validity of the scale and subscales was shown with Spitzer QLI.

The strengths of this measure are that it is brief and can be self-reported or completed with assistance, it was developed and validated simultaneously in both English and French languages, and additionally validated in other languages. Substantive data are available about psychometric properties and interpretation in the cancer context.165, 166 While this measure is designed to ensure that each question is applicable to all respondents, the questions are more general than other Quality of Life scales. This means that the measure is useful for identifying problem areas but it does not provide as much detail about these areas as other measures.

Other available multi-dimensional measures of quality of life including a spiritual/existential dimension include:Hospice Quality of Life Index (HQLI);168 Long-Term Quality of Life (LTQL) instrument;169 Quality of Life at the End of Life – Cancer (QUAL-EC);170 Quality of Life Concerns in the End of Life (QOLC-E);171 Quality of Life – Cancer Survivors (QOL-CS);172 Quality of Life Index (QLI) – Generic version;173174 Quality of Life Index -Cancer Version (QLI – CV);175 Skalen zur Erfassung von Lebens Qualitat bei Tumorkranken-modified version (SELT-M);176 World Health Organization’s Quality of Life 100 Spirituality/Religion/Personal Beliefs subscale (WHOQOL-100 SRPB).177, 178

Measures of Distress in palliative care

Schedule of Attitudes toward Hastened Death (SAHD), Rosenfeld et al, 1999,179 Rosenfeldet al, 2000180

The Schedule of Attitudes toward Hastened Death (SAHD) was developed to provide a standardised tool to assess medically ill patients’ desire for hastened death in response to the growing public debate regarding assisted suicide and euthanasia. The SAHD was intended to encompass several potential aspects of the desire to hasten death, including concerns regarding QoL, social and personal factors, and thoughts or actions taken to hasten one’s death, however no subscales are included.

The measure is brief, with only 20 items in a true/false answer format. Unlike other measures of desire to hasten death, the SAHD measures this desire on a continuum, with scores ranging from 0 to 20 rather than as a dichotomous variable (yes/no). Higher scores are indicative of a increased desire for death. The scale also allows for potential comparisons to be made between low, moderate and high levels of desire for death. Example items include:

  • I feel confident that I will be able to cope with the emotional stress of my illness
  • I am seriously considering asking my doctor for help in ending my life
  • I hope my disease will progress rapidly because I would prefer to die rather than continue living with this illness
  • I want to continue living no matter how much pain or suffering my disease causes
  • dying seems like the best way to relieve the emotional suffering my illness causes.

The scale has been validated in both non-cancer (n=195)179 and cancer populations (n=92).180 The scale shows good internal consistency (a = 0.88-0.89).179,180 In cancer patients the SAHD correlated strongly with the DDRS, a clinician- rated measure of desire for death (r=0.67) and was highly correlated with the measures of depression and hopelessness including HDRS (9r=0.49) and BHS ( r=0.55). Measures of physical wellbeing were also correlated with SAHS in the expected direction.

The 0-20 scale in the SAHD allows for greater variability in the desire for death ratings, which may be more meaningful for research. While further research may provide validation for use in a clinical setting, currently this tool is only validated for use in research.

Other available measures of distress in palliative care include Single-item screening tool for desire for death (Structured Interview for Symptoms and Concerns, SISC).110

Abbreviations of measurement scales

BDI - Becks Depression Inventory

BHS - Becks Hopelessness Scale

EWS - Existential Well-Being Scale

FACIT – Functional Assessment of Chronic Illness Therapy

HADS - Hospital Anxiety and Depression Scale

HDRS - Hamilton Depression Rating Scale

HOPES - Hunter Opinions and Personal Expectations Scale

McGill QOL - McGill Quality of Life Scale

NHS - Nowotny Hope Scale

PHQ - Patient Health Questionnaire

SAHD - Schedule of Attitudes Toward Hastened Death

SOC - Sense Of Coherence

Spitzer QLI - The Spitzer Quality of Life Index

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