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 rapidly assess the quality of life (QoL) experienced by family members providing care for individuals facing a serious illness, particularly in the context of palliative care or end-of-life settings. Developed by Cohen and colleagues, the scale addresses the unique physical, emotional, social, and spiritual challenges faced by the caregiver population. It focuses on the previous 48 hours, making it highly sensitive to recent changes in the care environment and the carer’s well-being. The QOLLTI-F is essential for clinical teams seeking to identify immediate areas of distress or need among informal carers.

Keywords

QOLLTI-F, family carer, quality of life, palliative medicine, caregiver burden, serious illness, end-of-life care, psychometric instrument

Authors

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

Purpose

The primary purpose of the QOLLTI-F is to provide a brief, reliable, and multidimensional measure of the QoL for family members involved in the care of a loved one with a life-threatening or serious illness. This instrument is crucial for clinical intervention, allowing healthcare providers and researchers to quickly gauge the impact of the illness and the caregiving experience on the carer’s personal well-being.

The scale serves as a practical tool in palliative care settings, enabling the identification of specific domains—such as financial stress, emotional state, or satisfaction with care—that require immediate support or intervention. By focusing on a short 48-hour recall period, it offers a snapshot of the current level of distress and satisfaction, aiding in timely clinical decision-making.

Construct

The QOLLTI-F measures the multidimensional quality of life construct as it applies specifically to the family carer. The construct is broken down into seven key domains that reflect the complexities of the caregiving experience during a serious illness. These domains encompass environmental factors, the carer’s personal physical and mental state, their outlook, and external factors like financial strain and the quality of professional care received.

The instrument captures both objective stressors (e.g., financial strain, care environment) and subjective states (e.g., sense of meaning, emotional well-being). The inclusion of items related to the patient’s state and the relationship dynamic highlights the interconnected nature of QoL in the context of serious illness, recognizing that the well-being of the patient significantly influences the well-being of the carer.

Validity

While specific comprehensive validity data (e.g., construct validity via confirmatory factor analysis beyond the initial factor grouping) is not fully detailed in the provided content, the scale is structured based on established domains critical to carer QoL research. The distinct factor structure suggests a degree of discriminant validity between the measured constructs (e.g., Financial Worries versus Carer’s Own State). Further published research (Cohen et al., 2006) supports the comprehensive nature of the domains selected, ensuring content validity relevant to palliative care environments.

Reliability

The internal consistency (often measured using Cronbach’s Alpha) for the subscales demonstrates varied reliability across the domains. The provided reliability coefficients are:

• Carer’s Own State: 0.81 (Highly reliable)
• Quality of Care: 0.71 (Acceptable reliability)
• Carer’s Outlook: 0.65 (Borderline acceptable)
• Relationships: 0.54 (Low reliability)
• Environment: 0.48 (Low reliability)

The strong reliability of the “Carer’s Own State” domain suggests that items measuring the carer’s immediate physical and emotional condition cohere well. However, the lower coefficients for “Environment” and “Relationships” indicate that these domains, as measured by only two items each, may require further refinement or expansion to achieve stronger internal consistency, though low item count naturally depresses the alpha value.

Factor Analysis

The QOLLTI-F is structured around seven distinct factors, derived from initial factor analysis of the items, designed to capture the complexity of the carer experience. The factor structure and corresponding item groupings are:

• Environment: Items 1, 2
• Patient State: Item 3
• Carer’s Own State: Items 4, 5, 6, 7, 8
• Carer’s Outlook: Items 9, 10, 11
• Quality of Care: Items 12, 13
• Relationships: Items 14, 15
• Financial Worries: Item 16

This structure confirms the instrument’s multidimensional approach to quality of life assessment, allowing researchers and clinicians to score and evaluate distinct areas of the carer’s life independently, rather than relying solely on a single global score.

Instrument

Test Type: Self-report questionnaire, multidimensional quality of life scale.

Format: 18 specific items plus one overall global rating (Item A). Responses utilize an 11-point numeric rating scale (NRS) ranging from 0 to 10, with anchored descriptors specific to each item (e.g., “very poor” to “excellent,” or “not at all” to “completely”). Items 3, 4, 14, 15, and 16 are reverse coded during scoring.

Language Available: Original development appears to be in English, with evidence of use and potential translation into other languages, such as Persian (referenced in Shahidi et al., 2014).

Population Group: Family Carers (informal caregivers).

Age Group: Adults (caregivers of seriously ill patients).

Population Details: Individuals providing primary or significant care for patients facing serious or life-threatening illnesses, often those receiving palliative care or hospice care.

Test Methodology: The scale uses a retrospective recall period of the past two days (48 hours) to capture immediate, current concerns regarding the carer’s QoL.

Permissions & Fee and Test Year

Permissions: Typically granted for research and clinical use upon request, as is common for academic scales in palliative medicine.

Fee: Information not provided, generally free for academic research use.

Test Year: 2006 (Year of primary validation publication).

Reference’s

The instrument and further explanation can be found in the following resources. The original PDF 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

• 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.

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

A. Considering all parts of my life – physical‚ emotional‚ social‚ spiritual‚ and financial – over the past two days (48 hours) my quality of life has been:

very poor 0 1 2 3 4 5 6 7 8 9 10 excellent

1. Over the past two days (48 hours) I was satisfied with the place _____ was staying (home‚ hospital‚ other):

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

2. Over the past two days (48 hours) I had the privacy I wanted:

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

3. Over the past two days (48 hours) the condition of was distressing to me:

not often 0 1 2 3 4 5 6 7 8 9 10 always

4. Over the past two days (48 hours) the amount of control I had over my life was:

not a problem 0 1 2 3 4 5 6 7 8 9 10 a huge problem

5. Over the past two days (48 hours) I had time to take care of myself:

never 0 1 2 3 4 5 6 7 8 9 10 always

6. Over the past two days (48 hours) I was able to think clearly:

not often 0 1 2 3 4 5 6 7 8 9 10 always

7. Over the past two days (48 hours) physically I felt:

extremely poor 0 1 2 3 4 5 6 7 8 9 10 extremely good

8. Over the past two days (48 hours) emotionally I felt:

extremely poor 0 1 2 3 4 5 6 7 8 9 10 extremely good

9. Over the past two days (48 hours) being able to provide care or company for made me feel good:

rarely or never 0 1 2 3 4 5 6 7 8 9 10 always

10. Over the past two days (48 hours) I was comforted by my outlook on life‚ faith‚ or spirituality:

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

11. Presently I feel that my life has meaning:

very little meaning 0 1 2 3 4 5 6 7 8 9 10 very much meaning

For questions 12 and 13‚ if you did not make important decisions or need health care in the past two (2) days‚ please answer for the last few times that you did.

12. Over the past two days (48 hours) I agreed with the way decisions were made for _____:

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

13. Over the past two days (48 hours) the quality of health care we received was:

not satisfactory 0 1 2 3 4 5 6 7 8 9 10 extremely good

14. Over the past two days (48 hours) I felt my interaction with was:

very comfortable 0 1 2 3 4 5 6 7 8 9 10 stressful

15. Over the past two days (48 hours)‚ overall‚ I felt my interaction with the other people most important to me was:

very comfortable 0 1 2 3 4 5 6 7 8 9 10 stressful

16. Over the past two days (48 hours) my financial situation has been stressful:

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

17. Over the past two days (48 hours)‚ I was comfortable providing care:

not at all 0 1 2 3 4 5 6 7 8 9 10 completely

18. Over the past two days (48 hours) overall‚ I felt my relationships with the people most important to me made my quality of life:

much worse 0 1 2 3 4 5 6 7 8 9 10 much better

What do you most want the care team to know?

Do you want us to give this information to the team? Please circle: Yes No

Reverse coded # 3‚ 4‚ 14‚ 15‚ and 16