Table 2 Assessing patient reported case-mix variables and patient reported measures defined in ICHOM PCB Set (Interviewee No. = 20)
Patient reported measures and other information | Importance (n) | Appropriateness of the time points of measuring and reporting (n) | Summary of the representative comments and views on the measure (The point was mentioned by at least five participants, 25% of all participants) |
|---|---|---|---|
Patient reported case-mix variables: Demographic Information, Obstetric and Medical History | Important: 15 Nice to have: 4 Not important: 0 (one participant did not give scores) | Appropriate: 19 To some extent: 0 Not appropriate at all: 0 (one participant did not give scores) | • The importance of items depends on the professional (obstetrician, midwife, nurse, researcher, etc.), situation (routine prenatal check-up vs. emergence of complications, etc.) and what the data is used for (health care operation, benchmarking, clinical decision making etc.). • In Finland, most of the suggested information has been collected by Neuvola via oral communication and a paper form and recorded in the Neuvola record system. The obstetric and medical information have been collected and recorded by hospitals. Most information can be found in the national birth registry. • Not all information needs to be reported by the woman herself, e.g. some obstetric and medical information. It may be too laborious for the patients to answer all the questions. • The time point of collecting “Multiple gestations” information is problematic, since women usually don’t know if they are carrying multiple fetuses until the first ultrasound. • Race and ethnicity cannot be asked in Finland • Education, occupation, and social support information has not been collected and recorded, but they are important or nice to know for recognizing who may need extra support. • Health behavior information, e.g. eating, alcohol and smoking, should be asked. |
PROM Health related quality of life [PROMIS Global10] | Important: 17 Nice to have: 2 Not important: 0 (one participant did not give scores) | Appropriate: 9 To some extent: 10 Not appropriate at all: 0 (one participant did not give scores) | • Some questions have been asked in Neuvola, but they have not been routinely and systematically collected yet. • A question specifically about the relationship with one’s partner and domestic violence could be added. • Postpartum check-up, if it is just after delivery or in a couple of weeks after delivery, is not a good time point to ask these questions. As shortly after delivery, mother’s hormones change and she starts to realize and get used to the life after having the baby. Three months postpartum could be a good time in Finland to measure women’s quality of life after having a baby. |
PROM Incontinence [ICIQ--SF] [Wexner] | Important: 14 Nice to have: 5 Not important: 0 (one participant did not give scores) | Appropriate: 6 To some extend:13 Not appropriate at all: 0 (one participant did not give scores) | • Some descriptions are quite vague, e.g. large amount, little amount, etc. • In Finland, the information has not been routinely or systematically collected yet. At the postpartum checkup, professionals may check, observe and record it, but it is not regularly reported by women. • Incontinence during pregnancy and childbirth is a very rare problem in Finland. It could be used as a targeted measure for those women who have incontinence problems either during pregnancy or after delivery. • Postpartum check-up, the period defined by ICHOM, is a quite early point to ask incontinence related questions. The most important time point is 3-6 months postpartum, when treatment is necessary if women still have incontinence. |
PROM Pain with intercourse [PROMIS SFFAC102] | Important: 16 Nice to have: 4 Not important: 0 | Appropriate: 7 To some extent:13 Not appropriate at all: 0 | • In Finland, the data has not been systematically or routinely collected yet. Intercourse issues are discussed if women bring them up. • It might be a challenging theme for some ethnic minorities or someone concerning privacy • At the first postpartum check-up, the time point defined by ICHOM, women are not usually having intercourse yet. The best time to measure this in Finland is 3 to 4 months after the delivery. |
PROM Confidence with role as a mother [ROLECONF] | Important: 18 Nice to have: 1 Not important: 0 (one participant did not give scores) | Appropriate: 8 To some extent: 11 Not appropriate at all: 0 (one participant did not give scores) | • Mother’s confidence has not been routinely or systematically measured in Finland. • It is too early to measure mother’s confidence at the beginning of pregnancy; It is more logical to ask about it at the end of the pregnancy. |
PROM Mother-infant attachment [MIBS] | Important: 18 Nice to have: 1 Not important: 0 (one participant did not give scores) | Appropriate: 5 To some extent: 14 Not appropriate at all: 0 (one participant did not give scores) | • In Finland, the information has not been routinely or systematically collected yet. • Feelings towards the baby could be very complicated and vary over time. • It is impossible for women to answer the questions during or just after delivery. • A good moment to measure this in Finland is at 2-4 months postpartum |
PROM Maternal confidence with breastfeeding [BFINTENT] [BFCONFID] [BSES-SF] | Important: 15 Nice to have: 2 Not important: 0 (three participants did not give scores) | Appropriate: 8 To some extent: 9 Not appropriate at all: 0 (three participants did not give scores) | • In Finland, Neuvola and delivery hospitals ask women about their intentions and experiences on breastfeeding, but their confidence has not been systematically measured yet. • There are too many questions, and some are complicated, and should be reframed and recorded. • Breastfeeding Self-Efficacy Scale (BSES) has been translated into Finnish. There are a lot of studies using it. • BSES items seem to be detailed questions about the success or experiences with breastfeeding, not about intention or confidence. • It is good to ask the woman the general questions about intention to breastfeed during the third trimester of the pregnancy. • It is too early to ask BSES questions during or just after delivery. One month postpartum and 3-6 months postpartum are important timepoints for measuring mothers’ confidence with breastfeeding. |
PROM Success with breastfeeding [BFSUCCESS] | Important: 17 Nice to have: 1 Not important: 0 (two participants did not give scores) | Appropriate: 8 To some extent: 10 Not appropriate at all: 0 (two participants did not give scores) | • In Finland, a midwife in the hospital observes and makes records about breastfeeding during postnatal care, and a PHN from Neuvola asks about breastfeeding intentions and experience. • Birth is not good moment to answer the questions and it is hard to say if breastfeeding is successful or not, since the hospital stay is short, and at the beginning breastfeeding may require time and several attempts. In theory, 3 months, 4 months or 6 months after delivery are good moments to measure it. • In Finland, water is not given to a baby before the age of 6 months. At four to 6 months postpartum, “solid food” option should be included. |
PROM Postpartum depression_Part 1 [PHQ-9] | Important: 17 Nice to have: 1 Not important: 0 (two participants did not give scores) | Appropriate: 12 To some extent: 7 Not appropriate at all:0 (one participant did not give scores) | • Mental health of women during pregnancy and childbirth has been a very important issue, and depression is one of the most important PROMs. • PHQ-9 is not used in Finland, but EPDS has been widely used as a screening tool. • During pregnancy, it is good to screen in the beginning to get baseline information, but the 3rd trimester is more important and relevant. |
PROM Postpartum depression_Part 2 [EPDS] | Important: 18 Nice to have: 0 Not important: 0 (two participants did not give scores) | Appropriate: 11 To some extent: 7 Not appropriate at all: 0 (two participants did not give scores) | • Neuvola is now regularly collecting relevant information about depression, using EPDS. • EPDS could be used to screen depression during pregnancy, not just postpartum. • In Finland, women are asked about depression at the two to four-month postpartum checkup |
PREM Satisfaction with the result of care [CARESAT] | Important: 19 Nice to have: 0 Not important: 0 (one participant did not give scores) | Appropriate: 14 To some extent: 6 Not appropriate at all: 0 | • A survey about the delivery experience and satisfaction has been routinely conducted in delivery hospitals. • It is tricky to ask about the result of care that is affected by many factors. It is more logical to ask about care process or to ask about care in general, and then to figure out why women are not satisfied and what needs to be improved. • Different care providers e.g. Neuvola and delivery hospitals, or different professionals, e.g. PHNs, midwives, and doctors, should be evaluated separately. • Instead of 6 months postpartum, 2-4 months postpartum is a more suitable time in the Finnish context to collect data and discuss service experiences with women. |
PREM Confidence as an active participant in healthcare decisions [HCR] | Important: 20 Nice to have: 0 Not important: 0 | Appropriate: 14 To some extent: 6 Not appropriate at all: 0 | • Involving patients in decision-making is a highly important topic that needs to be focused on now. • Different care providers, e.g. Neuvola and delivery hospitals, or different professionals, e.g. PHNs, midwives, and doctors, should be evaluated separately, and certain services, e.g. prenatal screening, should be specifically evaluated. • The key question should be, whether women get the information they feel they need. • It has not been systematically measured in Finland • Instead of 6 months postpartum, 2-4 months postpartum is a more suitable time in the Finnish context to collect data and discuss with women about service experiences. |
PREM Confidence in healthcare providers [HCR] | Important: 19 Nice to have: 1 Not important: 0 | Appropriate: 14 To some extent: 6 Not appropriate at all: 0 | • Different providers should be evaluated separately. • It has not been systematically measured in Finland. • Instead of 6 months postpartum, 2-4 months postpartum is a more suitable time in the Finnish context to collect data and discuss service experiences with women. |
PREM Birth Experience [BSS_R] | Important: 20 Nice to have: 0 Not important: 0 | Appropriate: 10 To some extent: 9 Not appropriate at all: 1 | • This is a core issue in maternity care. • In Finland, Visual Analogue Scale (VAS) is used to measure birth experience and satisfaction. Women answer the question during their postnatal ward episode after the delivery • [BSS_R] items should be calibrated to the general conditions in Finland. For example, the item, “The delivery room was clean and hygienic”, is not relevant in Finland, since there are no problems regarding the hygiene of delivery rooms. The item, “I came through childbirth virtually unscathed”, is ambiguous, and it is difficult for women to understand what is meant by it. • The data should be collected before women are discharged from the postnatal ward or within 1 week of the childbirth. |