Quality of Life During Serious Illness – Family Carer Version (QOLLTI-F)

Abstract

The Quality of Life During Serious Illness – Family Carer Version (QOLLTI-F) is a specialized psychometric instrument designed to measure the Quality of Life (QoL) experienced by primary family caregivers who are supporting a loved one facing a serious, life-limiting illness. Developed to complement the original Quality of Life in Life-Threatening Illness (QOLLTI) scale, the QOLLTI-F focuses specifically on the multifaceted impact of caregiving, covering physical, emotional, social, spiritual, and financial dimensions. It provides a rapid assessment, typically focusing on the past 48 hours, making it highly suitable for use in dynamic clinical settings such as hospice or palliative care environments where patient and carer status changes quickly.

The scale consists of 18 specific items plus a global QoL rating, utilizing an 11-point numeric rating scale (0 to 10) for scoring. Its structure organizes the caregiving experience into seven distinct domains, allowing healthcare professionals to identify specific areas of distress or well-being affecting the family carer. The QOLLTI-F is recognized as a vital tool for research and clinical intervention aimed at improving support for informal caregivers, who are crucial components of the healthcare system for individuals with serious illnesses.

Keywords

Quality of Life, QOLLTI-F, Family Carer, Caregiver burden, Palliative Care, Serious Illness, End-of-Life Care, Psychometrics, Health-Related Quality of Life, Caregiver Support.

Authors

Cohen, S.R., Leis, A.M., Kuhl, D., et al.

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Purpose

The primary purpose of the Quality of Life During Serious Illness – Family Carer Version (QOLLTI-F) is to systematically assess and quantify the subjective quality of life experienced by family members providing care to individuals with a serious or life-threatening illness. This assessment is crucial for understanding the multidimensional burden and well-being of family carers, whose own health and quality of life often decline due to the intense demands of caregiving.

In clinical practice, the QOLLTI-F allows care teams, particularly those involved in palliative and hospice care, to quickly screen for distress and target interventions. By measuring QoL across various domains—such as environment, personal state, outlook, and financial stability—the instrument helps ensure that support efforts are holistic and tailored to the carer’s most pressing needs, thereby improving overall care delivery for the patient-carer unit.

Construct

The QOLLTI-F measures the construct of Health-Related Quality of Life (HRQoL) specifically within the context of intense, high-stress caregiving for a seriously ill individual. This construct is viewed as a complex, subjective appraisal of satisfaction across several key life domains, including physical health, emotional state, social functioning, spiritual comfort, and financial stability, all filtered through the lens of the caregiving role.

The scale operationalizes this construct through 18 items, plus a global rating, which collectively map onto seven hypothesized domains. These domains reflect areas known to be significantly impacted by the serious illness and subsequent care requirements: the physical and emotional state of the carer, their sense of control, their relationships, and external factors like financial strain and the quality of professional care received. This comprehensive approach ensures that the measurement captures the subjective experience of the Quality of Life (QoL) of the carer, rather than just objective measures of burden.

Validity

While specific detailed validity studies (e.g., convergent, discriminant) are typically detailed in the primary publication (Cohen et al., 2006), the structure of the QOLLTI-F suggests strong Content Validity. The items were developed based on extensive clinical experience and literature concerning the impact of serious illness on family members, ensuring that the scale adequately covers all relevant dimensions of the carer experience (physical, emotional, social, spiritual, financial).

The subsequent factor analysis, which defines the seven distinct domains, supports the Construct Validity of the instrument, demonstrating that the items group together logically to measure the intended underlying constructs (e.g., Carer’s Own State, Quality of Care). Further research, as indicated by later publications using the scale, confirms its utility in differentiating QoL levels among various populations of family carers, suggesting good clinical and practical validity within the Palliative Medicine field.

Reliability

The reliability of the QOLLTI-F is typically assessed using measures of Internal Consistency (Cronbach’s Alpha) for its domain subscales. The original analysis provided the following alpha coefficients for several domains, indicating acceptable to strong reliability for most subscales, though some multi-item scales showed lower values common in complex quality of life measures:

• Carer’s Own State: 0.81 (Indicating high internal consistency)
• Quality of Care: 0.71 (Indicating acceptable internal consistency)
• Carer’s Outlook: 0.65
• Relationships: 0.54
• Environment: 0.48

The higher alpha for the Carer’s Own State (0.81) suggests that the items measuring the carer’s personal physical and emotional well-being are highly correlated. Lower coefficients in domains like Environment and Relationships suggest these domains may measure more disparate aspects of the caregiving environment or may require further refinement, though they are often retained due to their clinical relevance in assessing holistic Quality of Life.

Factor Analysis

The factor structure of the QOLLTI-F delineated seven distinct clinically relevant domains. This factor analysis confirms the multidimensional nature of the carer’s quality of life during a serious illness. The items are distributed among these factors as follows:

• Environment (Items 1, 2): Focuses on satisfaction with the place of stay and desired privacy.
• Patient State (Item 3): Measures the distress caused to the carer by the patient’s condition.
• Carer’s Own State (Items 4, 5, 6, 7, 8): Covers the carer’s sense of control, time for self-care, cognitive clarity, and subjective physical and emotional feelings.
• Carer’s Outlook (Items 9, 10, 11): Assesses spiritual comfort, faith, and the meaning derived from life and caregiving.
• Quality of Care (Items 12, 13): Relates to satisfaction with healthcare decisions and the overall quality of professional care received.
• Relationships (Items 14, 15): Measures the comfort and stress levels associated with interactions with the patient and other important people.
• Financial Worries (Item 16): Measures the stress resulting from the current financial situation.

Note that Items 17 and 18, along with the global Item A, contribute to the overall score but are not explicitly assigned to one of the seven core factors derived from the factor analysis shown in the provided source content, which focuses on items 1-16. Furthermore, specific items (3, 4, 14, 15, and 16) require Reverse Coding during scoring, as high scores on these items indicate a negative QoL outcome (e.g., increased distress or stress).

Instrument

Test Type: Self-report Questionnaire (Patient-Reported Outcome Measure – PROM for the Family Carer)

Format: 18 specific items plus a global QoL rating (Item A), utilizing an 11-point numeric rating scale (NRS) ranging from 0 to 10.

Language Available: English (Original), likely translated into other languages given international use (e.g., Iranian studies referenced).

Population Group: Informal caregivers, typically family members or close friends.

Age Group: Adults providing care.

Population Details: Individuals providing care for a patient with a serious or life-limiting illness, often utilized in Palliative Care and hospice settings.

Test Methodology: Respondents rate their experience over the past two days (48 hours) on an 11-point scale anchored by opposing descriptors (e.g., “very poor” to “excellent,” or “not at all” to “completely”). The short recall period ensures high accuracy in capturing current, acute QoL changes.

Keywords

Quality of Life, QOLLTI-F, Palliative Care, Caregiver assessment, Internal Consistency, End-of-Life, HRQoL, Cohen Scale.

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Authors

Author ORCID Identifier: N/A (Information not provided in source.)

Affiliation Email addresses: N/A (Information not provided in source.)

Correspondence Address: N/A (Information not provided in source.)

Permissions & Fee and Test Year

The QOLLTI-F was initially published and validated in 2006 by Cohen, Leis, Kuhl, et al. The scale is generally considered available for academic and clinical research use, though specific permissions should be sought from the primary author, S.R. Cohen. Information regarding current licensing fees is not contained within the source material, but the instrument is widely cited and used in the field of Palliative Medicine.

Reference’s

• Cohen, S.R., Leis, A.M., Kuhl, D., et al. (2006). QOLLTI-F: Measuring family carer quality of life. Palliative Medicine 20(8):755-767.
• Cohen SR (2014). Quality-of-Life in Life-Threatening Illness: Family Carer Version (QOLLTI-F). IN: Michalos AC (Ed.). Encyclopedia of Quality of Life and Well-Being Research. Springer, Dordrecht, Netherlands: Springer, 5356-5357.
• Shahidi J, Taghizadeh-Kermani A, Gohari MR, Ghavamnasiri MR, Khoshroo F, Pourali L, Cohen SR. (2014). Changes in daily activities of cancer patients after diagnosis: How do Canadian and Iranian patients perceive the change? Iranian Journal of Cancer Prevention.; 7(1):28-34.

The original PDF explanation and form for this instrument can be downloaded here: http://www.soignantfindevie.com/media/27982/QOLLTI-F%20Explanation%20and%20Form%20%20Apr%209%2007.pdf and here: http://www.eapcnet.eu/LinkClick.aspx?fileticket=LsjxLa1yjk8%3d&tabid=38.

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Items of the Quality of Life During Serious Illness – Family Carer Version (QOLLTI-F)

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.