Quality of life considerations in myelodysplastic syndrome: not only fatigue

Figures & data

Table 1. Two MDS-specific HRQoL scoring systems°*: QUALMS and QOL-E.

QUALMS	QOL-E
• QUALMS-P (physical burden) (14 items: tiredness, effect of low energy on schedule, weakness, inability to participate in activities, fatigue, worry about becoming a burden, hopelessness, bowel changes, shortness of breath, change in long-term plans, concentration issues, effect of healthcare on life, nausea, lack of energy)	• General perception of well-being (2 items: currently, compared to 1 month ago) • QOL-FIS (physical well-being) (4 items: heavy activities, climbing stairs, lowering self, self-care)
• QUALMS-BF (benefit finding) (3 items: grateful for tomorrow, quality information, gratitude when used to take for granted)	• QOL-FUN (functional well-being) (3 items: got little done, fatigue when working, napping)
• QUALMS-E (emotional burden) (11 items: could not do anything about the disease, unpredictability, no concrete answers, no clear information, fear of death, difficulty explaining MDS to others, progression worries, test result worries, anger, infection worries, limited emotional support)	• QOL-SOC (social/family well-being) (4 items: interference with life, oppressed by disease, burden to family, effect on retaining job)
• Other (5 items: family relationships strained, bruising, crowd avoidance, bleeding worry, financial worry)	• QOL-SEX (sexual well-being) (2 items: effect on sex life, sexual excitement) • QOL-FAT (fatigue) (7 items: effect on chores, how much fatigue, headaches, palpitations, disturbance of self-care difficulty, the effect of being bed-ridden, sleep quantity)
	• QOL-MDSS (MDS-specific) (7 items: shortness of breath climbing stairs, transfusion dependence, ability to do chores, ability to travel, dependency on healthcare, stress/worry, treatment side effects)

°Taken and adapted from [2]. *Reviewed and referenced in [2]. HRQoL = Health-related quality of life; MDS = Myelodysplastic syndromes; QOL-E = Quality of Life E; QUALMS = Quality of Life in Myelodysplasia Scale.

Table 2. Some MDS-unspecific HRQoL scoring systems: cancer-specific (EORTC QLQ-C30; FACT-An), hematology-specific (HM-PRO), and generic (SF-36, EQ-5D) tools°*.

EORTC QLQ-C30*	FACT-an*	HM-PRO*	SF-36*	EQ-5D*
• Function	• FACT-G	• Impact	• Physical functioning	• Mobility
Physical (5 items)	Physical well-being (7 items)	Physical behavior (7 items)	• Social functioning	• Self-care
Emotional (4 items)	Functional well-being (7 items)	Social behavior (3 items)	• Physical role functioning	• Usual activities
Role (2 items)	Social/family well-being (7 items)	Emotional behavior (11 items)	• Vitality	• Pain/discomfort
Cognitive (2 items)	Emotional well-being (6 items)	Eating and drinking habits (3 items)	• Bodily pain	• Anxiety/depression
Social (2 items)	• Fatigue a (13 items) ^	• Signs and symptoms (18 items)	• Mental health
• Symptoms	• Non-fatigue items relating to anemia (7 items)		• Emotional role functioning
Fatigue (3 items)			• General health perceptions
Nausea and vomiting(2 items)
Pain (2 items)
Dyspnoea (1 item)
Sleep disturbance (1 item)
Appetite loss (1 item)
Constipation (1 item)
Diarrhoea (1 item)
Financial impact (1 item)
• Global QoL (2 items)

°Taken and adapted from reference [2]; *All the reported systems were reviewed and referenced in [2]. EORTC QLQ-C30 stands for European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, EQ-5D for 5-item European Quality of Life Five Dimensions, FACT-An for Functional Assessment of Cancer Therapy-Anemia, FACT-F for Functional Assessment of Cancer Therapy-Fatigue, FACT-G for Functional Assessment of Cancer Therapy-General, HM-PRO for hematologic malignancy patient-reported outcome, HRQoL for health-related quality of life, MDS for myelodysplastic syndromes, and SF-36 for 36-item Short. HRQoL = Health-related quality of life; MDS = myelodysplastic syndromes; QoL = Quality of life; SF-36 = 36-item Short Form. The FACT-F^ score includes the 28 FACT-G items and the 13 fatigue items.

Oliva EN, Platzbecker U, Fenaux P, et al. Targeting health-related quality of life in patients with myelodysplastic syndromes - current knowledge and lessons to be learned. Blood Rev. 2021 Nov;50:100851. doi: 10.1016/j.blre.2021.100851

 PubMed Web of Science ®Google Scholar